Tag Archives: Daily life

Folding chairs

Posted in June by

Last Friday morning I walked into the kitchen for my usual coffee before my brother and I were headed out for an appointment with a lawyer to go over Miss Cathy’s estate. Tony had come over the night before after work to surprise mom with the visit. I knew she was very happy to have “her boys” all to herself and would be in the kitchen whipping up a fattening, artery clogging breakfast as only a mother could.

So, I wasn’t surprised when I saw Miss Cathy standing over the sink but something wasn’t quite right. It only took me a second to know by her less than usual “peppy” response to my salutation and the way she was slumped over that something was wrong. I went over to her, looked at her face and saw that she looked confused and disoriented.

Perspiring heavily, it looked like she was gripping the counter for dear life so I told her I was going to put the folding chair behind her so that she could sit down. I didn’t know what was going on with her but I knew that it was imperative to sit her down before she fell down. She wasn’t very communicative and her movements were very slow, as if she were trying to show me that she understood what I was saying but her body just wasn’t responding the way she wanted.

She didn’t seem able to move much at all; she just seemed to hang on. Seeing that she wasn’t making much progress on her own I held under her armpits and helped guide her down to the chair as gently as possible, talking to her the entire time, telling her what I was doing and how far she had to go before she was seated, reminding her not to “plop” down in the chair which is her habit.

Once she was seated I was able to look at her more closely and ask her a few questions to determine whether she might have been having a heart attack or stroke. It didn’t appear that she was so I got her a glass of water and wiped her brow and neck. Once I got her to sit down she couldn’t seem to calm down, she squirmed with what little strength she had until finally I was able to quiet her. She then told me that she thought she as going to throw up.

I reached for the nearest thing I could (which was an empty planter) and gave that to her while I went to her bedroom where she told me she had a supply of bags for vomiting. When I got back she had not thrown up yet but she’d dropped the planter, unable to control her fingers. She retched more than she threw up but there was some fluid and it seemed to help her to expel it.

I was able to keep her calm enough to sit for a few more minutes before walking her to her bedroom so that she could lie down. In her bedroom I got her to sit quietly as I debated with myself whether or not to call her doctor but in the space of those moments I took deciding she seemed to get better, I could actually see that the confusion was leaving her face and her movements became more fluid.

We took her blood count and it elevated (222 and her blood sugar is usually in the 140 –to 150 range). By the time we made the first “stick” she was talking in her normal voice and insisting that she wanted to go back in the kitchen to make breakfast. We got her cleaned up and I made the decision not to call the doctor but to tell him abut this episode when we see him next (which will be soon). I watched her as she walked (she insisted that she could walk un-aided) back in the kitchen and I sat with her as she prepared breakfast for my brother and me.

I reminded her that if she had been alone this was one of those occasions when she should have pressed her “medical alert” button and she agreed. But watching her “in the moment” it concerns me now that I don’t know that she would have had the presence of mind to do that. I know for a fact that if I hadn’t come into the kitchen she wouldn’t have had the wherewithal to pull over the chair that was less that a foot away for her to sit herself down.

She may have been able to hold onto the counter until whatever it was, low blood sugar, excitement about my brother being here or just a wave of nausea passed, and then do whatever was necessary to keep herself safe but I don’t think that would have been the case. She very well could have fallen and we would (potentially) have a repeat of the episode that started this entire journey in January of last year when she fell on the bathroom floor and wasn’t discovered for three days.

I know that the slightest interruption (good or bad) in her routine can cause a change in how she acts or responds, from something as very subtle as her demeanor changing to something like what happened on Friday. I don’t know if that was the case or not, that’s something I’ll talk to the doctor about.

After all the bickering, boredom and cost to my personal life its moments like last Friday that remind me why I’m here and I’m grateful that I can be. Like my friend William says, who takes care of (not only) his mother but his father as well, “It’s an honor to be able to spend the time with them and to do whatever I can to make there lives more comfortable after all they’ve done for me.”

Give me my flowers as I live so I can smell them

Posted in June by

I took Miss Cathy to another funeral this morning. They seem to be one of the few things she gets dressed and leaves the apartment for these days. Hey, I’m just glad she’s getting out and “getting some air on her” as she used to say to my brother and me when we were little and she wanted us out of the house (and out of her hair).

It’s a fact of life that as you get old-old people around you start to die. Years ago, I remember asking my Pop about death and dying after so many of his friends crossed over. There was a period of time when it seemed that almost every time I called home he (or they) were going to a funeral. At the time this phenomenon was specific to Pop because he was considerably older than mom so they had friends almost a generation apart.

As a former New Yorker, where going to a shrink is as common as getting your bagel with a “smear”, I was prone to “navel gazing “ and introspection after my time on the couch so I asked him how he “felt” about his peer group passing on. He looked at me as if I wasn’t as smart as he’d given me credit for and said, “Well, how do you think I feel?” “ After your last friend dies all you’re doing is waiting for your turn.”

Now I’m wondering if Miss Cathy is thinking the same thing because the mood has been a little funereal around here. It doesn’t help that the sermon she was listening to yesterday on Sunday morning television was all about “Love, peace and passing on”.

She doesn’t get maudlin and she’s not a very sentimental person but every now and then, she gets reflective-especially around occasions like the one today.

So, yesterday, I was surprised when she stopped me as I walked through the living room, past the reverend and his sermon, on my way out to the balcony to enjoy the cool morning air. She said she wanted to tell me that she never forgot a trip I made in my car from Kansas City a few years ago when I drove nonstop and slept in my car for a few hours before getting here as soon as I could.

She said that it touched her heart that I would show my love for family by dropping everything and doing what I did. I told her it meant alot to me to hear her say that. I started to well up watching her get misty-eyed.

“I believe in letting people know what they mean to me while they’re around to hear it”, she said, “some people wait till it’s time to go to a funereal to let what they feel be known.” “I don’t believe in all that, that’s just a “show”.

Then she looked me in the eyes and said, “Give me my flowers as I live so I can smell them.”

Good night moon ( Good morning Miss Cathy)

Posted in May by

I was in my room writing when I heard Miss Cathy moving around in her room and then I heard the sounds of her shower coming on. I looked at the clock and thought it was odd but went on about my business for a while longer. I got up from my desk to go get something to drink and as I passed by her doorway I could see her making up her bed.

“Good morning!” she said full of her usual morning cheer.

”Good evening”, I corrected her thinking she was making a joke. I started to continue on down the hall until I heard her say, “what?” “What time is it?”

“It’s 8 o’clock”, I answered. “ 8 o’clock in the morning right?” she asked looking puzzled.

“No, it’s 8 o’clock at night.” I said chuckling.

“Well, damn Sam, I thought it was time to get up, Oh well” “It’s Sunday-right?”

“No, it’s still Saturday, you’ve been asleep for about five hours, you took a nap.”

“Oh, okay, well, I woke up and I thought it was getting light outside so I just got up and took a shower thinking it was morning.” “ I guess I really f*cked up, didn’t I?”

We both laughed and I said that it was an easy mistake to make. Since it twilight it could have appeared to somebody just waking up that the sun was coming “up” instead of going “down”.

I really didn’t know she’d been in that deep of a sleep (or that she’d slept so long). I had been walking past her room for hours making all sorts of noise so she must have been out like a light (how she got so tired from a day of eating breakfast and lunch and watching TV in the living room is the real mystery to me-but I digress).

For someone who is constantly saying, “I rarely take naps in the afternoon” –guess where you can find Miss Cathy most days by 2 pm-in bed taking a nap. Hey, whatever makes her happy and she does seem happy, so, I say, “nap away”.

And contrary to what she also says about having a problem sleeping during the day (or at night after a hard day napping) she doesn’t ever seem to have any trouble “going under”.

I’m just happy I don’t have to read, “Good night moon”.

He said, she (thought) she said

Posted in May by

I came home late the other night from one of my cater/water gigs and sure enough Miss Cathy was awake and ready to share whatever “goodies’ I brought home to eat. I was so busy working that by the time I got to the kitchen the only things left were “greens” (a mix of kale and turnip greens) and Mac and cheese (all that was missing was the fried chicken to round out a good southern meal).

While I warmed up the food Miss Cathy was all excited to tell me that my ex, Chad had called to talk to her. Before she got into what they talked about she made a big deal of telling me that she was “half asleep” when he called so she didn’t recognize his voice right away but soon they were talking up a storm. Between mouthfuls of food she proceeded to tell me everything that was going on in his world (all of which I already knew) but it was great to see her so happy so I just let her talk (for a little while at least). She was obviously touched by his thinking of her and that meant a lot to me, too.

The next night Chad and I talked, catching up on our weeks’. Towards the end of our conversation he asked me if Miss Cathy told me that he had called. I told him that she had, prattling on and on and that she was so excited he’d thought to call to talk to her. He listened, then asked, “was that all she said?” and with some hesitation in his voice he said, “I have to tell you something that I think you should know.” He told me that at one point during the conversation that mom was at a loss for what she was trying to say and that the pause became long and bordered on uncomfortable.

He said that it was as if while searching for the right word she got lost in thought and confused about not only the word that she couldn’t remember but the topic as well. Chad said that he didn’t know quite how to handle it so he tried prompting her with a variety words thinking it would help “jog” her memory but then he was worried that “all the words he was throwing out at her” might be further confusing her.

What bothered him the most (I think) was when she finally “found” the word she was looking for it was “car-pooling” which had nothing to do with the subject they were talking about but Chad played along as if that was the topic at hand.

He said that he mentioned it because he wasn’t sure Miss Cathy would. I told him that she hadn’t mentioned that part of the conversation and that I understood all too well what he had experienced and I was grateful he told me about it. Thankfully it’s only one a few signs she displays that there’s anything wrong with her. He did the right thing by trying to help her remember what she was trying to say and that there is no “right way” to be in those moments.

It wasn’t until the next day when she brought up the conversation again, that it “clicked”. She said,” I don’t know what he must think of me, he must have thought I was drunk or something because I was “half asleep” when he called.” “I was laying there and I just couldn’t get myself together.”

That’s when it dawned on me that she had known something was “amiss” during their conversation and she was genuinely concerned with what had happened and how she came across to Chad. It also sounded to me like she was “covering her ass” with a convenient excuse (which to be fair) “half asleep” might possibly account for her not recognizing his voice at the beginning of the conversation but not the uncomfortable pause and use of a word that had nothing to do with the topic which was deep into the conversation.

I find it interesting that she knew that it happened and chose to find a way to blame her confusion on “sleep”, instead of attributing it to her condition but I’m used to that by now. Whenever anything occurs it’s never her fault or a result of her dementia, there’s always another explanation or place for blame. She may not remember what she said but she knows how to cover things up-or so she thinks.

Blame it on the a, aa, ak, uh alkaline

Posted in May by

I finished my first week working as a cater/waiter last Thursday, which was good because I couldn’t have worked one day longer. If I thought it was hard to run a 10k (back in the old days, after a night of serious disco dancing and drinking) well, standing around holding trays full of drinks and being “in service” makes that seem like a cakewalk.

The job is not without it’s perks; I’m getting out of the house, (re) learning my way around Washington DC, I’m getting a behind the scenes look at what it takes to put on events (intimate and extravagant) and there’s the scrumptious food, floral arrangements and gift bags that we’re allowed to take home (depending on the event and the captain you’re working for).

I did meet an interesting woman at one of the jobs sites. Her name is Lois and we met after “service” as we were all taking a well-deserved break and making our dinner from the leftovers. Like I said already, I have not been working long but what I have noticed it that there is “a lot” of food left over after these events, sometimes even after the staff has eaten, there is a lot that is thrown out-the abundance and the waste is amazing. Anyway, I was loading my fourth cupcake into a take out container when I heard, “Somebody sure has a sweet tooth.”

Embarrassed, thinking that it was a captain (the person that is in charge of all of the cater/waiters) I turned to see Lois, who was in charge of the pantry. She’s not my boss but an important person in the “food” chain. There is a hierarchy to this industry that I’m still figuring out but one thing I know already is that it’s best to know your place in the queue and who can help whom.

So, I said (quite honestly) “No, it’s not for me, I like to take my dinner home and share it with my mom -she’s the one with the sweet tooth.”

I’ve only been a week but Miss Cathy and I already have a little routine established, she kinda stays up waiting for me after my shift (or her eyes pop open the minute she hears my key in the door and is calling out “Heyyy”) and I share whatever food I manage to bring home and stories of how I’m trying to do a job that I have very little experience at (remember I “padded” my resume to get the job saying that I had cater/waiter experience back in New York when in actuality I went on a few jobs when friends in the industry needed an extra hand. I so impressed my new boss that he thinks I’m a seasoned cater/waiter and is ready to put me in charge of people when in fact I’m just impersonating a cater/waiter and learning on the job as I mimic others but I’m determined to become who he think I already am).

Anyway, back to the “cupcakes”….we sat down to take our break before “tearing” down the event, she with her dinner and me with my take out container full of goodies from the dinner I just served to a baker’s dozen of the “Masters’ of the Universe” at the Capital One Corp offices. We started to talk and I told her that Miss Cathy has Alzheimer’s and to my surprise she said that her dad does too (although why I’m surprised “should” be the surprise since the alz.org stats say that someone is diagnosed with Alzheimer’s every 69 seconds).

I was shaken out of my “thought bubble” when Lois asked,” Does she drink soft drinks?” and proceeded to tell me that her father (and her whole family) only drink “AlkinWater” and that they never ingest sodas. She’s a firm believer that the chemicals in soda pop cause/exacerbate or contribute to Alzheimer’s; she then told me that I should google Alkaline and its effects on the brain.

I didn’t think that working a catering job would be the place where I’d find information about Alz but “hey” you drink where you find the water so I started taking “sips”. In the short time we sat together she went into great depth about Alkaline, which medications to avoid (I gathered she’s not big on western medicine) and a host of other topics. We had to get back to work but we exchanged phone numbers and Lois said she’d email some more info to me.

I started doing some research on my own and came across some interesting information, Not sure what I think about the whole holistic eating and living approach but it is food for thought.

Spring in her step

Posted in May by

“I’m going out for a walk”, Miss Cathy announced one day last week, and with that she put on one of her summer hats (it was going to be 86 degrees that day here in Greenbelt) and she was off to the Rec-center where they have a treadmill she could walk on.

“I’ll take the trash out, too” she said as if it were an everyday occurrence and not the second time I’ve seen her do either since I’ve been living here.

“Good for you!” I thought.

Speaking of trash-the other day I had set the trash by the front door (as is my habit, in anticipation of taking it out later) when Miss Cathy volunteered for the job (another first). I said, “No, don’t worry about it, I’ve got to run some errands so I’ll take it out.”

And she said, “That’s alright, l take it out because I see it as a form of exercise.”

Well, color me surprised!

I know it sounds like a little thing but I was proud of her for insisting on the chore. And to think I had been lulled into a state of doing most things so that I didn’t expect her to ever offer to do a chore. To be fair, she takes care of herself very well and she does clean up around the house; vacuuming and dusting.

But it’s more than the chore itself-it’s the fact that she’s really starting to be more independent and out-going.

To me, its just more evidence that the two weeks she spent alone has given her a new attitude and some new life. She’s participating instead of sitting and waiting……for what? To deteriorate? The end? I don’t know, but that seems to be all in the past for now.

I started my new part-time job as a cater/waiter yesterday and Miss Cathy was tickled pink when I told her about the job. Interestingly, she was never quite this enthusiastic about things that went on with my art career-not that she wasn’t proud, I think that this is a “job” that she can relate to better. “Great!” she exclaimed, “at least this will be an opportunity for you to get out of the that “sweatbox” of a room of yours.”

I had to laugh; cause lord knows she was telling the truth! And with that I was off, to become one of the nameless, faceless servers at some swanky affair in DC. This will be interesting-I’m going from attending affairs like this to working at them.

Since Miss Cathy is in such a great place right now I feel comfortable leaving her for long periods of time, she’s got her medical alert necklace and a new attitude so what more assurance do I need!
ed!

Continue talking

Posted in April by

I got back from my “time off” last Thursday and unlike my other trips where I felt refreshed and energized this time was different. Unfortunately, the minute I got back it felt like I never left. Miss Cathy was chatting at me the moment I opened the door.

Of course a lot of that has to do with me and not mom, my personal life seems to be in transition so I need to establish a secure foundation and some structure in my life here.

It was great to see mom, she gave me a big hug when I walked through the door and not long after she was gone to spend some time with Adele leaving me some time alone to unpack and unwind. I could see that she had taken good care of the place while I was gone and there wasn’t much to do till I had to take her to the doctor the next day.

So, Friday morning I found myself sitting in the orthopedic surgeon’s office with Miss Cathy for one of her follow up appointments after her knee replacement surgery.

The office was a hot, non descript room full of old people in wheelchairs, casts, canes or some other indication that they won’t be signing up for Arthur Murray anytime soon. Everybody seemed to be there at the same time for the same thing. We all sat and waited to be called back into an exam room, most people killing time by talking and/or watching whatever god-awful midmorning television show happened to on the flat screen TV perched high up on the wall.

What was frustrating was that you make an appointment and show up on time but the reality is that you’re not going to see the doctor until he was good and ready to see you.
It’s an abuse of power that I have little patience for in my life but this wasn’t about me-it was Miss Cathy’s doctor and her appointment and I try my best to stay out of it.

Since this all started last year she’s shown very little patience herself with being kept waiting and her reaction can range from mild irritation to a complete melt down in the waiting room (so the apple didn’t fall very far from that tree).

Rather than sit anywhere near the television I chose seats on the other side of the room, thinking it would quieter-but no, but no (just my luck) we ended up sitting next to a couple that wouldn’t shut the f*ck up. The husband was a big blowhard of man. He talked just loud enough so that everybody else could hear his voice (his favorite sound I imagine) but no loud that’d think he was at sports arena. He sounded like a reject from the Henry Higgins School of snobbery and pretension so unless the front row of Wimbledon I don’t think you’d see him there.

It was hard to “not” hear someone so intent on enunciating so clearly in such an affected and old-fashioned manner of speech, making everything he said sound like it was occurring in 1938 New England and not an orthopedic surgeon’s office in suburban Maryland in 2011. The wife was a mousy thing, hanging onto his every word out of obligation or inertia, the perfect female compliment to his pontificating; she was the woman beside (or behind) the “man about town”.

Earlier, I was bemoaning the fact (to me, myself and I) that anytime I left my room I’d be subjected to Miss Cathy’s ramblings (I know she’s lonely but egads, can’t there be a moment when the two of us are in the same room and words need not be spoken?). But, this, this is an assault on my ears and I’m not even related to the man.

I do not want to hear this man’s opinions or anecdotes. I’d move but the only other option would be to sit near the other old people swapping stories about their particular ailments or surgeries as “Judge Punch or Judy” roared in the background. Oye! It’s Sophie’s choice!

I’d been back about 24 hours after being gone for two weeks and I felt as if I’d never left. I had a feeling it was going to be a verrrrry long day and it was, we spent more than two hours waiting for the doctor to come spend about ten minutes with Miss Cathy.

They took an x-ray then the doctor said that her knee was healing better than expected so she could expect more than 100% mobility and range of motion out of her artificial knee and she doesn’t have to come back for two years for another check up.

It occurred to me as we were leaving the doctor’s office that in the past (say three or four months ago) Miss Cathy would have been very angry and agitated by the long wait, complaining or making a mini-scene. Not this time, she was calm and didn’t complain, she mentioned the wait but it was just a statement of fact, in fact she was even trying to sleep to pass the time till her name was called.

It was a marked difference in behavior and I don’t know if it was because of her time alone or what but she definitely seemed to have a different attitude. I really have to give her “props” for how she handled herself and I need to try to follow her example.

I may not want to listen to her but I can still learn from her.

Shades of grey

Posted in April by

I’m off to the estate-planning seminar on Wednesday to get a jump on long term financial decisions that will have to be made but I’m coming up on a grey area in this whole care giving business. I try to stay out of Miss Cathy’s personal affairs as much as possible but we live in close quarters and lets face it-once you’ve had to bathe someone and help them in the bathroom the boundaries get a little blurred.

I’m sitting in the car right now writing as I wait for her while she’s in the bank “taking care of some business”. What the “business” is I didn’t ask (thinking it’s none of mine) and she didn’t offer. The caregiver in me who is aware of her finances is wondering what she’s up too and if it’s responsible of me to not be in there with her while she does whatever it is she’s doing (a light shade of grey).

Tony has taken over paying her bills and I handle her day-to-day financial needs. Now that she’s feeling empowered by the Neurologists visit it seems (to me) that she’s flexing her independent “muscles” a bit (if only that included some exercise like going outside and walking like the doctor suggested, too). Anyway, it’s her money but now that Tony and I are involved it’s our business, too.

I don’t know what she’s doing in there right now but I do know that she’s a senior citizen on a fixed income who’s been “pretty” responsible about her finances but she has made some (how shall I put this?) questionable choices money-wise that may or may not have anything to do with her condition-again (we’re in that grey area).

All I know is that I’ve “chosen” to respect her privacy and hopefully she’ll tell me what’s she’s up too. I’ll know soon enough because I have access to her accounts, but that’s not the point really. I just hope I’m not going to have to find a financial mess that Tony and I will have to clean up.

I guess the best I can do is to look for patterns, see what her financial reasoning is on paper, judge how responsible her choices are moving forward and deal with it then and that’s pretty black and white.

A lifeline

Posted in March by

Since the meeting with the neurologist things around here have been going pretty smoothly. Miss Cathy is still doing her “victory lap”; calling everybody she knows to tell him or her what the doctor said (or more accurately-what she “wanted” to hear him say).

Anyway, she called me into the living room recently to tell me that she had an idea about how to make “me” feel more comfortable about her staying home alone (what she doesn’t seem to realize is that I am “so fine” with recent events, I went through whatever upset and changes I was going through and now I’m moving on-next!).

She suggested that “she” should get a “medical alert necklace” (you know the one, you’ve seen the commercials on TV late at night, “Help! I’ve fallen and I cant get up!”) Well, I was surprised that she came up with the idea but after thinking about it I gotta say that I was impressed (even if “I” am the one that is going to have to look into getting it).

So, I added researching the “necklace” to the list of things to do. Tops on that list were contacting lawyers to get information about her estate planning. It’s not like there’s much of an “estate” but what little there is has to be carefully managed so that Tony and I can do the right thing by her and (hopefully) set up the future so that when she needs long term care everything is in place for her to take full advantage of Medicaid.

I got a list of lawyers from The Alzheimer’s Association and they also suggested I check out the NAELA (National Assoc of Elder Law Attorneys) website. Unfortunately, the list from the Alz Assoc needed to be updated. A lot of the lawyers that I called no longer practiced or the numbers were wrong and the NAELA website had some incorrect information, too. But, I persevered and came up with about half a dozen lawyers in the area to contact. And being the good little “do-bee” that I am I called my local contact at the Alz Assoc to tell him about updating the list (hey, it’s the least I can do with all the help they have given me).

It took about a week for the various lawyers to get back to me (for some reason four of the six all called on a Friday). They all seemed “capable” (over the phone) and took a fair amount of time to talk with me about what I wanted to accomplish. I knew that I needed something to try to distinguish one lawyer from another since I didn’t have personal experience or a recommendation from someone who had worked with any of them. The Alz Assoc takes great pains to say up front that they are not endorsing or recommending anybody, they are simply providing information.

I had my list of questions to ask and I found a way of “testing” how knowledgeable they were so that I could separate the competent from the cash seeking by asking all of them about the “look back” that Medicaid does for all applicants (something any lawyer worth his salt should know about if they handle any elder law cases).
The “look back” is the time frame by which Medicaid considers personal wealth in determining who gets “how much” money from the government agency that will be paid out for a persons’ long term care (the correct answer: under the current guidelines the “looks back” covers looking into the last five years worth of a person’s assets and holdings (and not three years that some lawyers are still quoting, by the way.

If Medicaid is satisfied that a person did not dispose of property or assets in order to qualify for benefits they will appropriate the necessary funds for care, if they feel someone has assets of any significant value (a relative term) they can determine that the person should shoulder most or part of the financial responsibility for care until their resources are exhausted or Medicaid can put a lien on the property to recoup monies paid out for care after the person dies and the property is sold).

They all agreed that it was wise to start the process sooner rather than later and told me that we are lucky to have Miss Cathy’s support and co-operation. A couple of the lawyers told me horror stories of how family members were trying to do the right thing by their loved one with Alzheimer’s but the person was unwilling to cooperate or too far gone in the disease to be able to help. Some (because of the disease) had become paranoid, combative and stubborn to the point of sabotaging plans by refusing to sign documents or not agreeing to what was in their best interest. So, more often than not they leave a mess for the loved ones to deal with (and sometimes a huge bill for care-remember, long term care can run up to thousands of dollars a day).

I did find two lawyers that I’m felt comfortable enough talking to over the phone to want to follow up with. One lawyer in particular impressed me because she was the only one to suggest that there may be other ways of planning for her long-term care other than (or in addition to) Medicaid. She told me that Miss Cathy could be eligible for a Veteran’s Administrating Pension Benefit that is given to widows of war veterans, the caveat is that the deceased only has to have been enlisted during a time of war-the soldier did not have to have seen combat. If she qualifies, it could mean a possible thousand dollars a month more toward her care so that’s definitely something worth investigating.

This same lawyer invited me to a monthly estate-planning workshop that she holds in her office, the next one is on April 5th and I plan to be there. It will give me a chance to not only gather some information but to check out the lawyer as well.

As for the medical alert necklace, I found two companies online that l felt comfortable calling based doff their websites. The first was “Lifeline”, the one that advertises on TV and the other was a competitor that seemed to offer the same product a t a lower price but I just didn’t get a good vibe from them so I was leaning toward the more expensive company that originated the product.

The good news is that their local rep called to give me a much better deal than was quoted to me originally (so be sure to have the Lifeline agent give you the contact telephone number for a rep in your area-there could be deals and specials that you can take advantage of to lower the cost of the service).
I signed Miss Cathy up, the equipment (which just plugs into a telephone landline power source to monitor activity in addition to the necklace) came on Saturday. I’m waiting for the fist of April to do the installation. I’m planning a trip to New York and Kansas City for two weeks starting on Aril 7th so Miss Cathy gets her freedom (she was sooo happy when I told her my plans).

She said that she changed her mind about the medical alert necklace after she found out how much it cost. Well, I said using her own words against her when she told me that, “Too bad, it was your idea and now I happen to think it’s a good one so we’re keeping it and you’re going to wear it.”

Whether or not she does remains to be seen-all I can do is all I can do and today I’m okay with that.

Rx for change Part II

Posted in March by

As Miss Cathy “sat” hugging the neurologist, Dr Alemayehu, for what she perceived was her “victory” over hearing that she was healthy enough to stay by herself, I sat in the corner torn between congratulating her for “winning” (when I didn’t realize there was a competition but I was sure as sh*t starting to feel as if there were-and I’d better catch up fast, “Nobody sticks Baby in a corner!”) and resenting her for seeing me as some sort of adversary that she had to best. I wanted to slap the smug, satisfied expression off her face (do I really need to put the “it’s just a joke/ I’m anti-violence disclaimer in here again?”), hand the doctor my keys, wish them both “God’s speed”, get the hell out of there and boogie back to my life.

But, if I did that, then what was the last year all about?

Digesting this new information made me wonder, “Had I over-reacted (and over-reached) by my decisions and actions this past year?” Had I got it so completely wrong?” And, if I got “this” so wrong, what else in my life was suspect? Suddenly “her” doctor’s appointment became “my” existential crisis.

My ego (and personal issues) aside I knew in my heart of hearts that this situation was ultimately about Miss Cathy and not me. I broke up the “love-fest” to tell the doctor that my only reason for being here was for my mothers’ well-being and whether I agreed with what I heard or not I was going to go along with what he advised.

I made clear my objections, cleared up some of Miss Cathy’s “tortured tale of confinement” and told the doctor the reality of what I was dealing with from my perspective and asked him what I should do. I tried to say this as calmly as possible but the ‘spat’ Miss Cathy and I had earlier had put me in a less than most diplomatic mood so it was hard to find words that weren’t “damning”. I was getting a little overwhelmed with emotion because (frankly) I felt betrayed by her.

The doctor’s focus was Miss Cathy (as it should be, she is his patient after all and I am not) so when he did acknowledge me it was to say that we’d never met and I (surprised and a little offended) had to remind him that I was the one that asked for him to see Miss Cathy in the first place a year ago and “I” was the one that met with him to go over her diagnosis (Hey, it’s a quibble, I know, he probably thought I was my three inches shorter, fifty pounds heavier brother but hey, the man meets so many people).

I could really care less if he remembered me or not-I just wanted him to listen to what I had to say and to (seriously) factor that in as he assessed her care (and not blow me off like some “Johnny-come-lately” well intended but mis-guided family member with no time “in the field”). While he seemed very matter of fact about the list of things I presented (that I thought) justified her not ever being alone, he explained that his focus (for right now) was that her biggest challenge was that she has short term memory loss and since she’s regained (after her fall last year and knee replacement surgery) most of what she needs to function independently day to day he felt comfortable with his decision.

He said that I could go out of town, leave her alone at home and I (or Tony) could check up on her by phone. He advised that we shouldn’t involve friends or other family members just yet. He said that to so might overwhelm her (it goes against my better judgment but hey….Okie-dokey doctor).

It was interesting (on some level) to watch the doctor take it all in as he listened to both of us; one, the parent (his patient) spouting what she knows to be “right for her” and wanting his approval and the other, me, the adult-child, “advocating” for what I feel is right-and in this case, advocating for Miss Cathy (against Miss Cathy) and wanting him to see that I had her best intention in mind and was not pursuing some personal agenda for my own benefit. I wondered how many times a day he goes through this.

He said after listening to her and observing her body language that “shuffling her around” from place to place causes her so much anxiety that it’s better to let her stay at home alone. He reminded me that Alzheimer patients thrive in their own environment and respond well to structure and routine and can deteriorate faster if stressed, anxious and in “unfamiliar” surroundings. So, clearly it was in her best interest to keep her at home where she is happiest.

Satisfied that she had the doctor in her corner Miss Cathy asked if she could drive. She’s been itching to get back behind the wheel of a car ever since I moved back here (and I’m sure our ‘spat’ about her backseat driving was fresh in her memory, too). As I write this I wonder if it’s not the driving that she wants so much as it’s the control of the situation -any situation, since she probably feels she’s losing control in so many other aspects of her life.

It got a little confusing at this point because the doctor said that he saw no problem with her driving “locally” (to the market or to a friend’s house nearby) but then (after I interceded and told him of her real intent-which was to do as she damn well pleased) he said that it was NOT a good idea-especially when she told him she wanted to go out and buy a new car.

Not hearing what she wanted she started to get a little “pissy” and she said she still had a valid driver’s license that was good till 2014 (as if that was some sort of chess piece she could play). His advice to her was to not waste money on buying a car (new or used) because it won’t be too long before she’s not able to drive at all. The doctor told her that “he” had the right to report her to motor vehicles and her license would be revoked if/when he determined that she was no longer fit to drive-checkmate.

We’d been with the doctor for quite awhile and I never really found a better segue so I had to ask, “What do I do if she hits me again?”

Miss Cathy gave me a look like she couldn’t believe I’d “ratted” her out like that. Man, was she pissed off (and embarrassed). Little things like hitting your child are not to be discussed “outside” the family. She tried to laugh it off, talking to the doctor “entre nous” as if the whole thing was insignificant but he wasn’t having any of it, “You have a bit of a temper don’t you Mom?” he said. Then the doctor turned and reminded me that increases in anger and paranoia are common in her condition and to try not to take it personally (easier said than done but I nodded anyway).

He lectured her on controlling herself and her temper. He told her that it wasn’t wise to alienate the people that are trying to help her-especially her son. He told her to start appreciating all that I’d been doing for her, too. He said that as a foreigner himself he was surprised when he came to practice in America how many of his patients are abandoned by their families and left to deal with their illness on their own. He told her how lucky she was to have my brother and me, how fortunate that we would WANT to take care of her the way that we have.

“I see many patients everyday, some in later stages of the disease, in very bad shape and they have no family or no one to take care of them”, he said very solemnly, “You are very lucky.” It felt satisfying to be acknowledged but it was a little sad (to me) that she had to be reminded of that fact (not that she isn’t grateful,she is-she’s just not cooperative).

He stood up to leave the room for a minute but before he did he gave her a piece of paper, a pen and asked her to draw the face of a clock and to put the hands at 10:30. When he came back he took the paper from her and he seemed satisfied with what he saw. He showed me her efforts and explained to me that while the drawing was crude and shaky it clearly indicted to him that she had not progressed any and was maintaining at “stage one” very well.

I don’t know, it was all just a little much to “take in” at one sitting. It’s not like I was vested in her being ill but I had been operating under the assumption (and medical advice) that was very different from what I was hearing now. So, as I sat there I started to feel strange-like I “needed” her to be sick(er) so that I had purpose-how f*cked up is that? I mean, wasn’t all of this suppose to be about her (and for her) anyway? Wasn’t the main reason I was here to help her to be as healthy and happy as she could possibly be given the circumstances (as I understood them originally anyway)? So, shouldn’t I have been over-joyed at the news that my mother could “more or less” take care of herself and that the doctor was using words like “high functioning”, “capable” and “independent”?

I mean, any rational person reading this or someone that has a loved one with dementia and heard those words would be ecstatic so why wasn’t I? I found it all very confusing. So, to be told there was less “care” to “give” I had to ask myself, “Where does this leave me?” All I heard was that I was “not needed” (as much) and I suddenly become very protective of my new identity as “caregiver”.

Of course part of me is ecstatic that I can go away for longer periods of time and not feel guilty, it’s just going to take a moment to re-group and get with the (new) program. I knew coming into this that things were going to shift and change (and not on my schedule) and this was one of those times. Moving forward I’ll get a chance to regain some of my life back as I continue to figure out what the “new normal” is for me.

So, finally, I can’t hope but think that for however long it lasts this new prescription for change is a good thing for Miss Cathy and for me, too.