Tag Archives: tips for caring for a loved one with Alzheimers

As good as it gets

Posted in August by

I’m back less than a week from my last trip teaching in New York and I can see that the time apart has done both Miss Cathy and me a lot of good. Peace and harmony seems to have replaced the tension and resentments that just a few months ago permeated the space we share.

Last year was the first time I filled in for a friend teaching a summer fashion illustration course from mid July to early August. It was an experiment to see how Miss Cathy could get along without me for up to four days (with Tony talking over as primary caregiver in my absence) and Ron (our upstairs neighbor that Miss Cathy considers a third son) to help out, too.

All went well so I could confidently accept the position again when they offered it to me this year.

While I was in New York teaching I had time to write, relax, see friends and just forget all about what my life has become and focus on what it is-which ain’t so bad.

My absence was a nice change for Miss Cathy too. Not only did she get to spend time with her other sons, her girl-friends came to visit more often and I’m sure she liked having here condo all to herself (more or less) while I was away.

Since I’ve been back I have noticed a few things worth mentioning. She’s been initiating projects around the condo then just walking away from them or forgetting that she even started them. And then there are those times when I remind her that something was her idea and I see from the expression on her face that she had no clue. Those moments are tough and her refrain, “Oh, I’m just as crazy as shit” is pretty much a guaranteed reaction.

I deduced a while ago that she gets more forgetful and “nonsense-ical” (my term for those times when “what” she says has absolutely nothing to do with the situation or conversation) when she’s upset, excited, stressed or anxious.

Lately though her memory seems to come into question even on those days when she’s otherwise pretty sharp.

It’s in those moments when she forgets that I remember to stay calm and loving. I gently try to give her what she needs; be it a reminder of the word she’s hunting for, patience as she searches for it, help solving the puzzle that her mind can become or simply sitting with her while she ruminates.

This month is the two-year marker of my “leaving my life to join hers’”. I’m slowly starting to accept where I am and who I am in this moment. I don’t know if it’s time, attrition or surrender that is the reason for my newfound state of resignation.

Whatever the reason, it is good to wake up and not have that sinking feeling come over me that I’m trapped in a nightmare (of my own choosing). It’s far from ideal but it’s not what it was before, or what it’s likely to be in the future….for today, it’s enough to know that this may be “as good as it gets”.

Senior moments: Part I

Posted in July by

Recently I’ve been driving Miss Cathy around to a few of the senior centers in the area because she expressed some interest in what they had to offer. Of course she didn’t just come out and “say” she wanted to go. Mom’s way of “asking” was to tell me how her sister-in-law, my Aunt Dorothy, who I’m related to as a cousin on one side of the family and a nephew on the other (hey, country folk…..what can I say) really “enjoys” the senior center in North Carolina where she lives and all it has to offer.

After listening to her I read between the lines, the same way I do whenever she asks, “do you like Popeye’s chicken?” (she knows I don’t). But, that just means that “She” does and she wants me to go get her “two pieces and a biscuit”. So I interpreted her chatter about Dorothy the same way, as interest in a senior center and I was right.

Unfortunately, I had thrown out all my brochures and research in a moment of disgust after keeping them for more than a year “just in case she changed her mind” and wanted to avail herself of all that was available to her as a senior.

When I first moved here I collected everything I could get my hands on about “what to do with an old person”. Back then I was eager to please and enthusiastic to share my findings with her (suffice to say it’s an entirely different story these days) my enthusiasm has waned and what I find is mostly apathy.

Back then she told me in no uncertain terms that she had no interest in being in a room full of “old folks” as she called “them”…which led me to wonder who the hell she saw when she looked in the mirror every morning.

But, the times, like underwear, do need to change and it seems that now she was ready for something new.

I was giddy with the prospect of getting her out of the house (even if it was for just a few hours a week) but I was unprepared and not knowing how or where to begin. But, not to worry, after a few clicks on the all-knowing Google I found what I needed and we were off.

I decided to sidestep the quaint facility that was located in Miss Cathy’s solidly middle class neighborhood for another more affluent area. So, our first stop was the Bowie Senior Center less than 10 miles away.

Tom Wolff aptly named this group of moneyed movers and shakers in his native New York the Masters of the Universe so this would be their Washington DC equivalent. If you’re searching for a place to park an old person better there be BMW’s and Lexus’ in the parking lot and not Civics and Ford Focus’s.

Out with the old-in with the (not quite) new

Posted in October by

One day I found myself standing in the small appliance aisle at Target shopping for an electric can-opener. We needed a new one (again) because Miss Cathy had gone through two since I’d moved in-not mention the two hand-held can-openers she’d also broken.

The latest malfunction occurred when she tried to open a can with a flip top lid. I was in my room working when I heard a horrific noise (it sounded like a couple of drunken cats singing through auto-tune). At first I ignored it but couldn’t the second time and went into the kitchen to investigate.

When I entered the room there she was, standing with the mutilated (and unopened) can in one hand and a perplexed expression on her face. I took the can from her, pulled the flip top lid and poured the contents into the waiting saucepan on the stove top.

“You can’t try to open cans with the electric can opener that already have a flip top,” I explained to her. “See, it’s even got a graphic on the top of the can. It’s a drawing of an opener inside a red circle with a line drawn through it to tell you not to use a can opener.””

“Oh, is that what that is” she said unfazed, stirring the sauce with a wood spoon,” I couldn’t tell what the was without my reading glasses on.”

“Well, that’s it for this can-opener.” I said as I unplugged it and threw it in the garbage can before going back to work in my room.

So, that’s how I came to be standing in this century’s version of “Woolworth’s” about to pay another $25.00 for a small kitchen appliance that had about as much chance of seeing in the New Year as an open bottle of good champagne.

Then suddenly, out of nowhere, I found myself putting the Hamilton Beach product back on the shelf, leaving the store and driving to one of the second-hand stores that I scavenge for the occasional mid-century piece of furniture or object d’art.

It’d dawned on me standing at the register in Target that I’d spent about $75.00 on electric can openers since I’d moved here over a year ago (and I’d yet to replace the skillets and saucepans that Miss Cathy had decimated-usually by forgetting that the burner was on high and walking away, scorching the pan-not to mention burning whatever was in it. And there was the ruined Teflon surfaces that she’d scratched up using silverware or other metal to stir or turn the food in the pans).

I’d realized that it was getting pretty expensive to replace things around the apartment and if I’m here for the marathon I’d have to pace myself financially to go the distance.
The appliances, the cookware…. the telephone, it was all just more collateral damage of the disease.

That day in Target I’d come to realize that places like the Goodwill, Valu Village and other second-hand stores are gold mines for the things that I needed as well as the fun things that I wanted.

Why pay retail for things you know your loved one with dementia are going to break (eventually-but not intentionally) when there is a low-cost alternative for those with a discerning eye.

Of course one would have to be very selective about the things they bought but I’ve gotta say, a lot of the second-hand stores have merchandise that’s in very good condition and some even have brand new items from stores that are over-stock that they sell at a greatly reduced price.

I suggest finding second-hand and thrift stores in/around or near upscale neighborhoods (their cast-offs are usually always of a higher quality than those of people on lower-income brackets).

For example, instead of paying $20 to $35 dollars for a new can opener I bought one (that had been “gently used”) for $6.00 (and it was a Hamilton Beach appliance) and it works great. I got the same bargains for the cookware, too. I paid $5 and $10 dollars for pans that would easily cost $50.00 or more at Macy’s.

The way I see it, Miss Cathy still deserves the best-I’m just giving her the best that someone else had purchased first.

So now she can break and burn with abandon (because we all know it’s just a matter of time before it happens again) and the can-opener’s days are numbered but I don’t have to worry about counting because I know where to get a quality back up cheap.

I’m Okay, You Okay? Part ll

Posted in September by

I was on my way out the door but feeling uneasy about leaving Miss Cathy by herself, even thought the earthquake had long since passed. I had my metro card in one hand and the other reaching for the doorknob. I knew I’d heard what I wanted so that I wouldn’t feel guilty but I also knew that my gut was telling me something else and I’ve learned (after so many times of not listening) that “gut” trumps whatever I’m thinking so I said, “You know what, I’m not going to work, I’m going to stay here with you.”

Although she said she’d be “fine”, I could see that Miss Cathy was visibly calmer.

I put my shoulder bag down and went to call my boss only to discover that my cell wouldn’t call out (still not realizing the extent of the damage done by the quake). But I realized that I could still text so I sent him a message, changed clothes and joined Miss Cathy on the sofa to watch the news coverage.

We sat watching the television as the full scope of what occurred unfolded before our eyes; there was no loss of life (yet reported) but the quake was felt from the Carolinas up to New Hampshire with varying degrees of impact depending on where you were. Every federal building in Washington DC (where I was headed) was evacuated and most businesses shut down for the rest of the day. The metro (which I would probably have been riding into the city) was slowed down to 15 miles an hour so they could check all tracks for damage. I listened as the newscasters did there best to report the news “ live” without the teleprompters to give them the cool, impersonal polish they usually have during regular broadcasts.

I text’d family and friends asking how they were (if they were on the East coast) and to let them know that we were okay.

One of the reporters commented that we’re lucky to be living in a time when technology has advanced to a place where even if land lines were down and you couldn’t get a strong enough signal on a cell phone to call, one still has the ability to communicate via text. To illustrate his point the camera pulled back and you could see most people on the streets were busy texting on their cell phones.

The same was not definitely not true of the earthquake in I experienced in Manhattan in the early 1980’s or even ten years ago when I was still living in New York City on 9/11. I don’t think I had the ability to text on my phone that day or if I did it was so new (to me anyway) that I didn’t know ‘how’ to text. No matter, the events of that day are buried deep, no need to dredge them up now, suffice to say, I don’t think texting was as prevalent as it is now.

I sat next to Miss Cathy wondering, “what was I thinking?” to even debate whether or not to leave her alone. I was disappointed in myself that my first (and only) response wasn’t to stay and support her. And (during the quake itself) when my first instinct was to make sure my IMac didn’t topple over (granted I was standing right in front of it) instead of immediately rushing out to take care of Miss Cathy, I had to wonder (again) if I’m seriously cut out for this job.

I’m like that overwhelmed parent that leaves the baby in the car seat “on top” of the car and starts to drive away before realizing that ‘something is missing’ AND then remembering his primary obligation and purpose.

I hope whoever is keeping score won’t deduct too many points from me for that day.

I turned and asked how she was doing and she said, “I was heading into the bedroom to take a nap when it happened but I’m wide awake now.”

“I guess that earthquake fixed you for sleep”, I said smiling.

Miss Cathy said that ‘if’ it happened again she would go downstairs to a neighbors apartment. I told her that the best place to be if an earthquake ever happened again (and I’m not around) is to move away from all windows, especially the sliding glass doors, and stand under a doorframe in the back of the apartment.

I held her hand and made her promise she wouldn’t go outside the apartment and risk falling down the stairs. I told he that her balance isn’t good on her best day and in a panic with the ground moving it was a recipe for disaster.

She promised she would heed my advice (but she also promised to stop talking on the telephone in the living room while she was cooking) so I knew to take any pledge she made with a grain of panic.

The phones were back in service an hour or so later so mom jumped on the horn to call family and friends, expelling some of her nervous energy.

I took the time to go back to my room to do the same. The news reports said that the last earthquake to hit anywhere near Washington, DC was more than 100 years ago-an amazing little factoid.

Less than a week later most of the East coast was battened down bracing for Hurricane Irene. Again, we were spared any major damage by the time it hit our area as Irene had been downgraded to a tropical storm but holy moly-that’s a lot of Mother Nature for one week!

Since there had been so much coverage on the weather channel about the impending hurricane Miss Cathy was mentally fully prepared. She wasn’t nervous at all, just concerned as she watched the coverage.
Hurricanes and earthquakes can be traumatic for the most stalwart of us, making it all the more difficult for anyone with cognitive and/or behavioral issues. Special attention must be paid during and after to keep them calm and to explain the unexpected in a manner that is reassuring to them in a way that they can understand.

The experience taught me that like other aspects of our life living with Alzheimer’s that have had to be adjusted, it’s best to be prepared in the event of a natural disaster and I found some great tips on the Alz.org website at: http://www.alz.org/nca/

So, thanks to what I’ve learned I’m okay. Do yourself a favor, learn what you can do so that you’ll be okay, too.

Paper Chase Part IV

Posted in August by

“Okay,” Cheryl, the lawyer replied, satisfied with Miss Cathy’s answer to her query as to why she thought she was there, meeting with her. She went on to ask mom question after question about what she wanted done with her condo and her belongings. Everything she asked were all the things that Tony and I had gone over with her weeks before but I’m assuming she needed to ask Miss Cathy so that she could hear the words come out of her mouth just to be clear that mom’s wished were being carried out and she wasn’t being taken advantage of.

Then Cheryl asked, “Can you tell me what’s been going on with your health.”

“I’ve got diabetes,” answered Miss Cathy.

“Okay,” Cheryl said, taking copious notes, “ what else.”

“I’ve had a left knee replacement.”

“What else.”

“I have high blood pressure.”

“Okay, what else.”

I could see that Miss Cathy was perplexed, she looked like a little school girl who had successfully named all the letters of the alphabet but the teacher was asking for more so the poor student was wrecking her brain trying to think what comes after “z”.

Tony and I looked at each other knowing what Cheryl wanted to hear but didn’t want to appear as though we were “leading the witness”; finally I looked at Miss Cathy and said,
” Why do you see the neurologist, Dr Aleymahue?”

“Oh yes,” she said, eyes bright because she knew the answer and wanted to get a gold star,” I have dementia and Alzheimer’s.” (Talk about burying the lead!)

Satisfied with Miss Cathy’s answers about her health, Cheryl wasn’t quite finished though, she still had more some questions for Miss Cathy to answer, pen in hand ready to write down everything she said. “What does Ty do for you?”

Now you could see that Miss Cathy was warming up to the subject and she almost gave winked at Tony and me to let us know that she remembered what we’d talked about with her in the kitchen earlier that morning to ‘prep’ her.

“He’s a great help to me,” she started, “he cooks my breakfast.”

“What else..”

“He helps me when I take a shower, he makes sure that I don’t fall.” The back and forth went on as mom told Cheryl what I did to help her during the day. I could see that she was very proud when she said, “He comes in and turns off the TV and light for me at night when I go to sleep.”

Nice as it was to be acknowledged for that, I knew Cheryl was looking for something a little more substantive to help mom apply for a caretaker exception for her Medicaid application, but (to her credit) Cheryl was patient and kept on asking the same question, “what else” until Miss Cathy offered up more relevant help like the fact that I dispense her medication and help her with her daily blood sugar test (that included taking a blood sample and reading the meter.)

Finally Cheryl seemed satisfied that mom was acting of her own free will so moved on and opened up a new folder (one of many that she had fanned out in front of her at the conference table that represented the various programs and procedures that we were undertaking.) She passed the applications forms to me then and then she went over the documents needed to apply for Medicaid, to set up a Personal Caregiver Agreement and a possible assistance stipend from the Veterans Administration program set up for widows of war veterans.

I’d handed over copies of the dozen or so documents that Cheryl requested that I bring for the meeting. She noticed that a copy pop’s birth certificate was not in the pile and I explained that he was born in 1923 and the hospital he was born in burned down decades ago and the all the records were lost.

“Mom did write to the courthouse of the town where he was born to get something in writing stating that the hospital burned down but we can’t find that document,” I said by way of explanation.

She said that it was imperative that we find the letter that verified his birth because without it (even though we have his social security card and discharge papers from the VA) she was afraid any application we submited would be rejected or sent back until they had everything that they asked for.

Cheryl told us that she’d need a couple of weeks to draw up the papers for Miss Cathy to sign (after she had a copy of the missing proof of pop’s birth). Then she gave me a form (Yikes! another one) for Miss Cathy’s family physician to fill out for the Maryland Medical Advisory Board to ascertain her eligibility for assistance as a person in need of a caregiver not living in a nursing home.

As we were wrapping up the meeting Cheryl made a point of telling Miss Cathy that even thought Tony was paying the legal bill and he and I were acting on her behalf that she (Cheryl) was Miss Cathy’s lawyer and her allegiance was to her alone and not to us.

Cheryl and Tony left to take care of payment leaving Miss Cathy and I in the conference room alone for a few moments.

“You did very well,” I told her. I didn’t have a gold star but I did say, “I’m proud of you.”

And I was, too. I knew that her natural inclination when being asked about her health is to say, “I’m fine” and to tell whomever was asking how independent and self-sufficient she is. So, I know it was hard for her to list her ailments and to even suggest that she needed help (in any way).

But, she knew how important this was and even though she’s telling the truth it isn’t the truth she tells herself on a daily basis.

I’ve yet to hear her tell any of her friends or a stranger for that matter that she has dementia (not willingly anyway) and though she’s grateful for my help it’s nothing that she readily discusses and in her mind I’m living here with her mainly because of her ‘knee replacement’ and balance issues.

“Thank you,” she said. ” She seems very knowledgeable, you guys have done a great job putting this together. Man, this is a lot of work, isn’t it?!”

As we rose to leave the office I knew that we were still at the beginning of a long process, and there’s no way we’re going to have an incomplete file now, not after coming this far and all the hard work it took finding all the documents we did have (not to mention paying the lawyer a hefty retainer.)

I knew that we’d looked for the letter confirming pop’s birth in Virginia (the correspondence dated back to the 1970’sfrom what I remember seeing) in Miss Cathy’s extensive files that she kept (and to her credit she pretty much has every legal document necessary and almost always knows where it is stored) but for some reason this particular letter wasn’t where it was suppose to be…we need to find it so the paper chase continues for one more document.

Post script: Miss Cathy hunted for the document for two days like a woman possessed and she found it. The official document was photo copied and mailed off to the lawyer to be included in one of many filings that were to go out after we returned to sign the various documents….more on that as “Paper Chase” continues in Part V

Paper Chase Part ll

Posted in July by

A few weeks after my phone call with the lawyer, Cheryl Henderson, I attended her estate-planning workshop with about a dozen other people, all of us eager to find out how best to take care of our loved ones. While there was some valuable information shared and I learned a few new things, it mostly validated the work that my brother and I had already done on Miss Cathy’s behalf. Back when Miss Cathy was fist diagnosed with dementia in January of 2010 it was Tony’s idea that we draw up a POA (Power of Attorney) and a Medical Advance Directive, turns out these were the two documents at the workshop that were stressed as the “foundation of any good estate planning” because without them one has very little power or control in matters concerning their loved one in times of need. Knowing that we’d done something right (and were on the right track without even knowing it) made me feel pretty good about the choices we were making for our mother.

I mean lets face it, we were doing our best and what we were doing was out of love for our parent but “love” isn’t going to going to convince a doctor to follow your orders in a medical emergency, you gotta have the right paperwork-and you’re going to need it before you have to decide whether to pull a plug or switch somebody off.

Anyway, I was impressed enough with the seminar (and the lawyer) to suggest to my brother that we meet with her. After comparing everyone’s schedules and going back and forth a few times I was able to make an appointment for early June (remember I started this process in late April). That gave me plenty of time to fine-tune my list of questions for the meeting (after gaining a better idea of what to expect from the seminar and a clearer understanding of the process we were about to undertake).

I was most intrigued by the “Veteran’s Aid and Attendance Benefit” so my first order of business after the seminar was to call the Veteran’s Administration. I was on hold for about fifteen minutes (whattayougonnado) but ultimately it was worth it because the representative was very helpful when he finally came on the line. I found out that our situation isn’t as straight forward as some others because my step-father served during World War ll and record keeping was spotty back then so Eddie, the representative didn’t immediately find him in the system but he assured me that just because my Pop wasn’t showing up on his computer that he could be found somewhere, somehow.

I think that anyone that’s going to call the VA to inquire about a deceased Veteran should have the Vet’s social security number and (more importantly) their discharge papers when you call (the more information you have when you call a government agency the better!) and always, always document your call by asking for the representative’s name, a case number and be sure to note the day/time of your call (that’s a little “Ty tip”;).

Having this information at the ready is helpful as you follow up with questions at another time because chances are that whomever you speak to is going to ask who you spoke to previously.

Eddie was able to give me some basic information as to how my mother could possibly qualify for the little known monthly stipend paid to widows of war vets. As expected, the paperwork is extensive and to qualify you have to be practically destitute but “nothing ventured (except time) by applying and there could be as much as a thousand dollars a month for Miss Cathy to gain based on need. The representative promised to mail the necessary forms and information to me (info is also available on the Veteran’s Administration website at http://www.va.org).

If you find the website as complicated as I did, it may be well worth the wait to call the VA at: 800-827-1000 (just make sure you have your knitting or a crack pipe to suck on while you’re on hold waiting to speak to someone-another “Ty tip”;)

Later that week Tony and I had a phone meeting to go over what I’d learned and to talk about what we (each) wanted to accomplish at the meeting with the lawyer. My brother and I work very well together and it definitely helps to talk things over before speaking on our mother’s behalf so that we’re on the same page. Even though we’re family and we have the same goals our approach may sometimes be different as to how to get there so I always think it’s best to compare notes ahead of time so that we show a united front. The system; doctors, hospitals, lawyers and the like can sometimes be less than welcoming to loves ones of a person in need so the last thing they want to encounter is bickering siblings with divergent agendas.

We decided to bring as much documentation that we thought might be necessary (Miss Cathy’s social security card, deed, will, bank account, as well as some of our deceased step-father’s information). I think there’s nothing worse than being asked for something in a meeting that you “thought you might need” but don’t have with you so why not bring it along-just in case, after all, it’s just paper.

The laywer’s office was quiet and serene on the day we had our meeting, it was not crowded and buzzing with activity the way it was on the day I came for the estate-planning seminar. The receptionist led us into the conference room where I sat weeks earlier but this time there we only three of us in the room.

After introductions we settled into our seats and began. Cheryl told us about herself and her practice (more for my brother’s benefit because I’d already heard her spiel). When she asked why we were there we took that as our cue to dive right in. Tony told her what we wanted to do and I read to her our list of questions. We finished by asking her if she could help us.

She listened to what we had to say and took notes about our questions, then Cheryl told us that there were a few ways to accomplish what we wanted then she gave us the pros and cons of each scenario. At one point she said, “If I had “this or that” document then I would be able to tell you “such and such”, and wouldn’t you know it-we had most of what she was asking for so we were able to get specific information from her about our situation and quickly more away from generalities.

We discussed Irrevocable Trusts, Revocable Trusts, Life Estate (Ladybird) Deeds, Personal Care Agreement, Medicaid and the VA Aid and Attendance benefit and tax implications among other things.

One of the things we realized after talking with the her is that a will is not a great option for us; probate can be expensive and the estate (what little there is) could be tied up in the courts for up to a year (something to think about when you’re planning for those left behind after your loved one has passed away). It sounds as though one of the Trusts is better suited for our needs to accomplish what Miss Cathy wants to happened with her things and the Personal Care Agreement will help take care of planning for her inevitable stay in a nursing home.

As for Medicaid, it’s a great government program that pays for long term nursing home care, but the individual is responsible for a portion (if not all of the expenses associated with the nursing home) if the individual goes into a nursing home before the five-year period after they have applied. The “five year look-back” determines the individual’s financial situation and there ability to pay for their own care, so the clock starts ticking only “after” you apply so, the sooner the better. If your loved one goes into a nursing home five years after you apply then the gov’t pays for everything. If they have to go in before, then they (or you) will be responsible for the nursing home costs until the five-year time “window” is closed.

It’s important to know that Medicaid will never take someone’s house while they are alive, but monies owed for care will be recuperated after the sale of the home upon the person’s death unless other arrangements have been made to dispose of the property and/or have the home exempt as an asset that Medicaid can put a lien on.

As you can imagine, the meeting lasted well over an hour and by the time we left my head was swimming with all the info that was floating around in it. Thank God Tony was there because I needed him to help me figure out what the hell was said in the meeting and what works best for us.

After much discussion we’ve decided to move forward with the Personal Care agreement (which includes help applying for the Veteran’s Aid and Attendance Benefit) as well as an Irrevocable Trust.

So, now we’re gearing up up to meet with the lawyer one more time in early August to get the ball rolling and so that Cheryl can meet Miss Cathy. In the interim I’ve been gathering the following documents and paperwork for our next meeting; Marriage and divorce decrees and certificates, Death certificates, Birth certificates, Deeds, Bank accounts, Military discharge papers, Monthly household expenses, Names of doctors and hospital visits, Social security award letter, Physician’s statement and Proof of income-Oye Vey! That’s a lot of paper!

I know that we’re among the lucky ones because Miss Cathy is still able to be part of the planning and the process. She can express to us what she wants to happen to her (and her things) after she’s gone so we can all work together to make that happen. A lot of people don’t have the luxury of their parent’s cooperation and input; one in particular comes to mind. I have a friend who’s parent is much farther along in the disease than my mother so he doesn’t have his parent’s input or cooperation, he’s acting alone to plan for long term care and doing the best he can to decide what happens “after”. Unfortunately (and this is an oft told tale) he and his loved one are at odds because his parent’s dementia makes him not able to fully understand what is happening so he’s combative and his behavior is often detrimental to the process (of their adult child making preparations for the parent’s long term care and passing).

I think it’s important to be able to honor your loved one’s wishes and provide for their needs as best as possible and at the same time take in consideration those left behind and the burden they may have to bear. Death and dying and long-term care can be uncomfortable conversations to have but they’re important and you’ve got to have them, especially if your loved one is capable talking about those things.

Alzheimer’s is a baffling and cunning disease so if your parent or loved one is in the early stages, start the conversation now-if there disease has progressed past the point of their involvement then do your best to honor them as you see fit-after all, you’re among (or you are) the closest person to them and I always feel that if you’re acting from a place of love then whatever action you take can’t be wrong.

So, I know we’re lucky and I know that even with all the paper I have to chase it’s worth it so that Miss Cathy’s wishes are honored and she’s taken care of properly. The more I can do now the better chance that no one (i.e.-me) is buried under a mountain of red-tape and paperwork down the road.

Paper Chase Part l

Posted in July by

My brother and I have started the process of getting Miss Cathy’s “Estate” in order. We also want to sure that when the time comes she’s able to take full advantage of Medicaid for long-term care in a nursing home.

The process is daunting; hiring a lawyer (good luck setting all of this up on your own), researching what to ask, what to expect, and the paper work and forms, Oye Vey! Part of me is frustrated (and panic’d) that we’ve dragged our feet for so long and another part of me wants to cut the two of us some slack and remind myself that “things happen when they’re suppose to, and if we didn’t do it before it wasn’t meant to be so if we’re doing it now, it’s the right time”, so, there’s that constant push/pull of reprimand and encouragement going on in my head (it’s getting awful noisy in there).

The first step was a lot of research (mostly online) finding out what to expect and the steps to take. The more I read and the more I learned it seemed like pretty dangerous water to navigate alone so it became glaringly clear was that we’d need a lawyer. Given the legal world we swim in it’s best navigated by sharks (i.e. lawyers) anyway. Don’t get me wrong, I have the utmost respect for lawyers, I just hate that I feel powerless in that arena, like I’m always having to depend on a lawyer to translate and interpret my options, the law and then advocate for me. And the whole process and outcome never seem to be as clear-cut as on TV. The way the system works you’re as good as “dead man walking” if you enter into a courtroom to represent yourself. The “legal-eeze” in the documents alone is enough to make you feel like a damsel in distress so that one of the lawyers on the TV commercials (from the firm of “Rip-off, fly by night and takes all your money up front with no guarantees of getting you want you asked for) appears to be your knight in shining armour.

So, it was with that skepticism that I started my quest back in April. First, I contacted the local chapter of Alzheimers.org and they gave me a referral list of lawyers in the area that specialized in elder-care (a growing market of lawyers that work with families on estate planning, wills, Power of attorney, etc). They even have an organization called “The National Academy of Elder Law Attorneys” (website: http://www.naela.org) and can be researched state by state.

The list for my area wasn’t that long which surprised me given that we live just outside a major Metropolitan area (and judging from the assisted living, retirement communities and the huge amount of space given over to handicapped parking in the local shopping areas) I assumed it would be like shooting fish in a barrel to find a lawyer.

There may not have been a plethora of lawyers to choose from it was a start and in the end all I needed was just one good lawyer that we’d been comfortable working with.

I wrote down a short list of specific questions that I asked each lawyer during my initial phone call to save time and to help eliminate lawyers that I didn’t think would be a good fit for our situation. I didn’t want to waste my time or theirs so I made a point of being very specific and stressed what my ultimate goal was for my mother and asked them about there experience doing what I needed. These were my questions:

1) My goal is to help my mother qualify for long term care in a nursing home and have Medicaid pay for all of it-how do I achieve that and respect her wishes that her home not be used to pay for her care?
2) What is the Medicaid “look back“ that I’ve heard so much about and are there any ways around it?
3) Is her current will valid?
4) Does she need “estate planning” if she has little in the way of assets?
5) Do you charge for a consultation and if so/what?
6) What is your hourly rate?
7) Do you charge by the project or by the hour?
8 What has been your experience working with “elder care”?
9) How many estates have you set up?

If I was lucky enough to get the lawyer on the phone (and they were gracious enough) to indulge my questions I took notes so that I could compare and contrast later. Asking about the Medicaid “look back” was the most eye-opening question because the laws have changed recently and one lawyer cited old information and it made me realize that I shouldn’t assume that “any or all” lawyers I talked to had the most current information.

I left messages with secretaries for those not available and it took the better part of a week to talk to the seven lawyers on my list. After eliminating the lawyer with the outdated info (that was no-brainer) and the one who said that eldercare was really not the mainstay of his practice, I was left with five to choose from and they all said and offered pretty much the same thing (with a slight variation on their hourly rate which ranged from $275 to $400 an hour) except one.

Interestingly, only one lawyer, Cheryl Chapman Henderson asked me a question none of the others did. After my standard “Q and A” she asked me, “Do you know about the VA Pension Benefit?” and when I answered “no” she proceeded to tell how Miss Cathy might be able take advantage of this little known program offered to widows of a veterans who served during a time of war (any war). She had piqued my interest with that little factoid so that exchange put her on the top of my list-I liked that she brought something to the table that I would otherwise never have known about.

She also told me that they hosted a free estate-planning workshop at her firm so I signed up, thinking it would help me to gather some more information that would help me make a decision as to how to proceed.

Next week Paper Chase: Part ll

Reaching out

Posted in June by

I was talking to my good friend Stefano the other day, telling him that I’d been reaching out to people on Facebook more and that I had “friend-ed” someone I knew through him. He told me that he had just told this same friend about my blog because his friend was going through a similar situation with his mother and suggested that we talk to one another.

I had no idea of his situation when I “friend-ed” him, only remembering that he’s an interesting person that I met in New York but was living in Europe that I hadn’t been in touch with for awhile. Well, I don’t believe in coincidences and wasn’t surprised when Lester, the friend and I were on the phone soon after talking about Alzheimer’s.

He told me that a little over a week ago he had flown to New York to visit his mom in Queens after being in Los Angeles for work. He said that he was surprised by how different his mom was, that he knew something was wrong with her and that something had to be done immediately to get her help. I listened to his story, verbally nodding in agreement and acknowledgement that I knew exactly what he was talking about as he related stories of her erratic behavior.

His situation is different from mine (of course, no two experiences with dementia are exactly alike). For one his father is still alive, but elderly himself so isn’t able to cope (mine is dead) and Lester’s brother lives on the West coast (and mine is only an hour away in Virginia) so he’s more or less doing all of this by himself but the end result is the same-he’s the adult child of a parent that now needs his help to guide her through the end of life as she guided him at the beginning.

I listened as he told about her conspiracy theories, paranoia, forgetfulness, confusion and his very real fear that she was going to get in a car accident because she was still driving herself to school where she still teaches. He said that she was very clever about how she covered up her shortcomings and had developed shrewd methods to compensate for her mental deterioration.

I could hear in his voice how tired and sad he was and there was a moment as we talked when I could hear the realization hit that his mother as he knew her may be gone forever.
I told him to think of her in a different light, to (take some time and) mourn the loss of the mother he knew but to remembered to hold onto the love (which is still there and always will be) and to focus on developing a new relationship and new bonds with her, as she will be ever changing because of the disease.

From all that he told me and all that he’d learned (and learned to do) in just a week’s time I told him that he’d done a remarkable job considering. I shared bits of my experience where it made sense but tried to be sensitive and remind myself that this wasn’t about me and my experience-this was about listening and hopefully helping someone who was just joining the “brotherhood”.

As we talked I made a few suggestions; I learned in AA years ago never to “tell” someone what to do, the normal reaction from most adults (and kids, too) is to put up a wall and become defensive when being “told” what to do so whatever you’re saying never gets a chance to be absorbed, processed or possibly acted upon.

So I “suggested” that he not argue with his mom and that right now “being 100% honest with her” (which was the basis of the relationship that he had with her before all this happened) wasn’t as important as getting her to the lab for an MRI and an appointment with a neurologist for a complete evaluation to determine what her condition is and at what stage. I told him that I’m very much of the “ends justifies the means” school and to lie to her if he had to achieve his goal which is to help her.

I told him about Alzheimers.org (an organization he said he didn’t know existed) and how helpful they’d been for me with everything from resources to support groups. I told him about the legal ramifications of what he was about to undertake and what he might need; power of attorney, medical directives, estate planning, etc as well as thinking about long term care facilities and how to plan for that. I could imagine that his head was about to explode form so much information coming at him all at once. He said that it was more than he had anticipated but that he was grateful.

The best piece of advice I gave him was one that was given to me early on by several people-that as a “caregiver” to make sure that he takes to take care of himself.

I didn’t really know what that meant in the beginning, so focused was I on my mom and her welfare that I wasn’t really doing the best job of taking care of myself, so I don’t think I was best prepared for the “marathon” that this process of care is instead of the ‘sprint” that I was my initial approach.

Truth be told, l think that I’m “just’ beginning to take care of myself (a year into this process) which definitely impacts how I can care for my mom. But, it takes what it takes and as Maya Angelou says, “When you know better, you do better”.

I told Lester that he wasn’t alone and that he could add me to list of people to call for support or if he ever just wanted to vent and have someone to listen (and not give advice, judgment or an opinion) I was here for him.

I got off the phone realizing that in talking to someone who was new to all this that I knew more than I thought I did. I was sorry for his situation but happy (for lack of a better word) that I could reach out and give what so many have given to me by way of support, empathy and information.

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.”

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.