Hi! My name is Allan. I'm a middle-aged child of a demented parent. Since 2010, I've been caring for my mother, who has dementia. It's been a difficult journey, and I have neither easy answers nor happy endings to share.

What I do have to share is basic information on how to care for a loved one with dementia or Alzheimer's.

DISCLAIMER: I am not a licensed or trained medical or psychiatric professional. Anything you read here, you should check with a qualified professional. What I have written here are my own experiences in coping with a parent with dementia.

If you're looking for information on what to do about your parent, whether they've already been diagnosted with dementia or Alzheimer's, or even if you just suspect that they may have memory issues, start with these two entries:

1. General advice and observations ... http://memorycare.dreamwidth.org/344.html

2. How to communicate with a loved one who's memory-impaired ... hhttp://memorycare.dreamwidth.org/724.html
(A/K/A "Compassionate Communication with the Memory Impaired.")
[A friend complained on social media that he couldn't believe how quickly his mother had declined in "just" 28 months since her dementia diagnosis. This was my response.]

My mother devolved rapidly within only a year of her diagnosis, though she was exhibiting signs for about a year before that.

Know this: Anything you do or don't do won't have the slightest effect on her devolution. It's gonna happen no matter where she is or who's she with.

Doesn't matter if you house her in a shithole or the Taj Mahal; she's going to continue to decline, and you can't change or delay it.

Trust me, every family with a demented member has tried everything in a vain attempt to slow the decline of their loved one. The only thing such efforts accomplish is to give the family a sense of false hope that gets dashed a few days, weeks, or months later. Don't fall into that trap.

As the neurologist and social worker at Kaiser explained to me, you have only three duties regarding a demented family member:

1. Keep her physically safe.

2. Keep her physically comfortable. (She'll never be emotionally comfortable again, so give up on that right now.)

3. Give her as much reassurance and love as you can, and have the rest of your family do the same.

Everything else that everyone else in or out of your family throws at you is bullshit for which you most sincerely don't time or energy.

Seriously. Everything else is bullshit.

"Safe. Physically comfortable. Reassured." That's it.

The sooner you work through those three points and learn to focus ONLY on those three points when making decisions from this point forward, the easier the rest of this journey will become for you...or perhaps "less difficult" is a better description.

The harder truth to point out is that this is no longer the woman who raised you. This is a person who looks and sounds like your mother, and who has a lot of her memories, but the woman you knew before is psychically, psychologically, cognitively dead. It's just taking the body a while to figure it out.

As current events "trigger" my Caregiving PTSD, I've been writing out essays, each of which will form a chapter if I ever get around to writing that book about caregiving for parents with memory issues.

Here's the most recent essay. I'm still not sure how to wind it up, or if I should just leave it like this:


The most horrible thing to me about dementia/Alzheimer's is the devolution of our loved ones.

We all know how heartwarming and uplifting it is to watch a toddler take their first steps.

Dementia turns that around, as caregivers watch their loved ones LOSE skills day by day.

In my mother's case, she went from walking with an occasional cane assist to walking leaning heavily on a cane.

Then the falling started.

Truthfully, it's my suspicion that the falling had been going on for some time, when Mom was still living in Chicago. For the last two years of her Chicago residency, I would arrive at her condo to find Mom bruised on her arms, legs, and/or face.

"What happened?" I would ask on each of these occasions.

"Oh, I fell," Mom would reply all-too-casually.

"Where did you fall?" I would ask in an increasingly tightening voice.

"On the street/curb/sidewalk," she would answer.

"NO," I said, as if to a small child, "at what LOCATION did you fall? Was it on the front or back steps of the [condo] building? In the park? Downtown?"

"I don't recall," she would say.

"When did this happen?" I would ask, trying to remain reasonably coherent.

"Oh, a few days ago...or maybe it was about a week ago. I don't recall." was the inevitable answer.

"Why didn't you call me?" I would ask, "you carry a cell phone with you."

"I didn't think of it at the time," she would say. Or..."I didn't remember I had the phone." Or..."I didn't have my phone with me."

After moving to California, Mom's walking became increasingly unsteady. She "graduated" from a regular cane to a 4-point cane, which she immediately "lost" (a lot of things she didn't like got "lost", along with a lot of things she did like, such as her favorite skirt and matching shoes), to a walker which she absolutely loathed.

Things came to an emotional head for me when we went out to buy her a new hat.

One of the things Mom lost a lot (well, FIVE of the things, actually) was her baseball cap. I swear she must have been throwing them in the garbage, because if she'd left them in any of the public areas, one of the staff would have returned them.

I remember checking her out of her ALF on a weekday afternoon and taking her to the local Target.

We hadn't gotten her a handicapped parking tag (an error which I wished many times I had rectified a lot earlier), so I parked a few hundred feet away from Target's main entrance.

It took Mom--and I am not exaggerating--nearly twenty minutes to cover that few hundred feet in her walker. She kept fighting the walker, and stood and complained about how hard this all was. This wouldn't have been a problem if she hadn't been standing directly in the center of the garage's main traffic lane. I finally got her into Target, and navigated her into the elevator (I didn't trust her abilities to navigate the escalator) up to the shopping level.

Once we got to the carts, I had a brainstorm. "Mom, would you prefer to use the cart to support yourself instead of the walker?" (This is what my mobility-impaired husband does when he shops, rather than try to limp heavily with a cane.) She eagerly agreed.

That's when my brainstorm turned into a brainfart.

Mom couldn't control the cart, which kept rolling forward as she leaned forward, the cart getting farther and farther away from her. I stopped the cart just in time to keep Mom from falling face-down on the floor.

The entire shopping trip to buy a single baseball cap--which took nearly an hour with me very firmly controlling and slowly moving the cart (which Mom was leaning on)--was one of the most stressful and unpleasant experiences I ever had with Mom. Getting back to the car from the store took us not quite 40 minutes, roughly twice what it had taken to get her into the store from the car.

That was when we rented her a wheelchair.

That was also the last time I took her outside her ALF for anything other than a doctor's appointment.

Shortly after she moved into her final board-and-care facility, during yet another emergency room visit, Kaiser Permanente qualified her for Palliative Care, meaning that a nurse practitioner/doctor team would visit Mom at her facility rather than my having to bring her to the doctor's office. This turned out to be substantially easier, as I only needed to meet the NP or doctor at Mom's facility a few times a month without having to schlep Mom into and out of her wheelchair and my car. From that point on, she never left her facility again until she died.

There are a number of details I've left out of the above account, such as her emergency room trips from all of the falling from walking without a cane/walker/wheelchair, or the physical therapist telling me that it simply wasn't possible to rehabilitate a client whose memory doesn't work, because their brain simply won't ingrain a new pattern any longer.

Then there were the constant fights over using her cane/walker/wheelchair. She hated them because she increasingly couldn't use them.

Mom's memory doctor told me this wasn't because of a loss of motor control, but rather was due to the loss of something called "impulse control". Mom's mobility decreased rapidly because her brain was no longer capable of processing input which said, essentially, "Hey, you're falling; move the other way to compensate." This was linked with behavior control. Some typical issues: Mom would try to change direction by turning her head but not her body...or she'd get up without using a cane and would simply fall over.

Mom also fell out of bed many, many times at her fancy ALF, which provided a private apartment for each resident. She was incontinent, and needed to use the bathroom in the middle of the night. There simply wasn't enough 24 by 7 supervision. She fell probably a couple of dozen times during her stay there.

Ironically, Mom's night time falling stopped only after I transferred her into a much less expensive "board and care" facility which was dedicated to dementia and Alzheimer's clients.

Her first couple of weeks in the board and care, she fell trying to take herself to the private bathroom. The staff would hear her crying or screaming for help, and find her on the floor of the room's bathroom, more often than not covered in urine and feces.

After that, the board and care not only took Mom to the bathroom just before she went to sleep, the night shift came in between 1:00 AM and 2:00 AM to proactively "bathroom" her, so she never needed to leave her bed without supervision.

Because Mom critically insulted her roommate, and because of the toiletting issues, we eventually moved her into a room without a private bathroom, so that if she did manage to leave her bed at night, she'd have to come out into the hallway where she'd be spotted by a staff member. From that point forward, there wasn't a single night time fall.

My mother's devolution wasn't limited to mobility. Her cognitive and conversational skills declined steadily.

Right after she moved to California, she insisted that she needed a morning newspaper, so I set up a subscription for her. The first few months (in the first ILF) she read through the paper and commented to me on various stories. A year later (in the second ILF), she made a show of skimming through the paper while I was there, but didn't discuss any news stories with me.

In the expensive memory care ALF, she never even bothered to unwrap the newspaper. It took me a while to catch on, but I eventually found out the REAL reason she wanted a newspaper subscription was to find out what day and date it was. We tried getting her an extra-large clock which showed the day and date, but no matter where we put it, she either ignored it or wouldn't look at it. (We actually went through several bedside clocks, which she kept throwing out for reasons unknown.) When she stopped bothering looking at the newspapers (I'd find three or four of them piled up on her desk), I cancelled the subscription. She never noticed.

There were other devolutions, too, such as conversational ability. Mom went from being a highly interactive conversationalist to being only a responder, to responding only in short sentences, and so on. By the end, she was responding only in single words: "Yes", "No", "Maybe", or silence. Or head nods or shakes. She stopped talking completely the last three weeks of her life.

She stopped eating by herself a couple of weeks before death, but would accept food and drink.

She stopped accepting food 2 days before she died.

She stopped accepting water the day before she died.

The entire process was like watching a newborn in reverse. Towards the end, a gentle caress on her cheek was the only way to draw her attention. This is the same reflex that's instilled in newborn babies.
 

I wrote this for a friend. This will probably be the introduction to the book my friends are pushing me to write about caring for a parent with dementia or Alzheimer's.

CARING FOR A PARENT WITH DEMENTIA OR ALZHEIMER'S:

In these situations, we do what we must, and not what we want, because we know deep inside that it's the right thing to do, and that if the roles were reversed, this is how you would have wanted to be taken care of.

Knowing this doesn't make doing the necessary things right, fun, or pleasant; it doesn't bring joy or gladness into our hearts. Knowing that you're doing the necessary things at the necessary times is, perversely, the only reward we get.

The doing of good deeds for others without expectation of recognition, reward, or acknowledgement is, in the Jewish faith, called "making a mitzvah".

Jews don't make mitzvahs because they hope for better treatment after death, for Jews don't have a concept of the afterlife. Jewish culture decrees that mitzvahs should be made to make the present world, in this life, a little bit nicer, a little bit saner, a little bit more polite. Mitzvahs are, in somewhat generalized terms, Judaism's method of fighting entropy. 

Caring for a desperately ill aging parent
 (or other loved one) when dementia or Alzheimer's is involved, is a mega-mitzvah.

Why bother if their mind is going (or gone)?
 Because you don't know that they aren't trapped inside their minds somewhere, watching everything you do, and cheering you on for doing the right thing, no matter what their traitorous mouths may say or their hands may do. 

Even as they externally scream or cry or call you names, there is quite possibly a shade of the loving, intelligent parent inside thanking you for caring enough to do whatever it is you must do for them.

It is for the mere possibility of that isolated, small voice deep inside your parent that you do these things, without question, without hesitation.

Every so often, the events of the past four years wash over me. There's no predicting when and where it'll happen.

Brushing and flossing my teeth, I sometimes flash back to searching for dental insurance for Mom when she first moved to the Bay Area. Found a reasonable plan, and found a dental clinic in Fremont that had good reviews. The clinic was fine, if a bit impersonal, but the staff was pleasant and understood that I needed to stay with Mom due to her dementia. I learned a lot about dental work from sitting in a chair in the corner of the room where Mom could see or hear me.

I remember when we discovered that at some point one of her front lower teeth had broken off and fallen out. When did she notice? "I don't remember." That became the answer to nearly any medical or dental question she was asked, which only made her care more difficult.

The dentist had to remove the broken stub left over, plus the tooth next to it, which was nearly rotted out and would have led to a bone infection. I don't recall how long the procedure took, except that it was a long time. It wasn't the dental office's fault, but dealing with Mom was so difficult, with the exception of one post-op exam, we never had an appointment last less than 90 minutes. Even getting Mom's teeth cleaned took an average of 2 hours.

After Mom had the two bad teeth (or should I have termed that "one and a half" bad teeth?) out, she looked in the mirror, and started crying. When I asked her why, she cried loudly, "Because I look like an OLD HAG!"

The dental assistant looked a bit startled, and tried to explain that Mom could get implants or dentures...which only made the crying worse. I simply made soothing noises and assured Mom that she didn't look like an old hag (well, actually, she did when she set her face in that particular expression) until she calmed down.

Loss of social filters and loss of emotional control is a common symptom of dementia, and once those filters go, they don't come back. Instead of maturing, dementia patients regress in emotional and psychological age. They forget social and physical skills...but that's a post for another time.

I remember evaluating the cost of implants, which was going to be several thousand dollars. We went as far as going back for the bone grafts, which were going to take several months to heal.

At some point, on the advice of the dental hygenist, I bought Mom a special electric toothbrush that would make it easier for her to clean her teeth. Just a year or two previous, this wouldn't have been an issue. Mom's dementia had progressed to the point where she couldn't use the electric toothbrush, which at one point I found her vainly trying to use to scrub her teeth without bothering to turn it on...because she didn't remember how to switch it on. I moved her back to a manual toothbrush at that point, and depended upon the facility's caregivers to work with Mom to brush her teeth.

Shortly thereafter, I moved Mom to a different facility in Sunnyvale. Suddenly it took 30-40 minutes of travel time each way to and from the dental clinic in Fremont, plus the onsite appointment.

A short car ride wasn't an issue for Mom. A long car ride was agonizing for both of us. Dementia patients are remarkably similar to autistic kids; too much visual and auditory stimulation can cause mental/emotional meltdowns. Trying to keep control of Mom during a long car ride was just like trying to control a five year old...except the five year old would remember my requests.

I solved this issue quite accidentally, by putting on music in my car from a satellite radio network's 1940's channel. Mom instantly calmed down and even began singing along, oblivious to everything around her. This was a vast improvement over the constant stream of question/answers ("What kind of trees are those?" "What kind of trees are those? "What kind of trees are those?"), although getting Mom to and from the car, and getting her in and out of her seat belt was increasingly a challenge for both of us.

Mom's last dental appointment for cleaning at the Fremont dental clinic took three hours onsite, plus nearly two hours of travel time. An entire day of dealing with what should have been a simple procedure left both of us emotionally and physical drained.

I tried taking Mom to a dentist in Sunnyvale who was literally across the street. She wasn't walking well enough to walk to the end of the block and cross the street, so I drove her...across the street.

That appointment--which was just an initial consultation--only took TWO hours. Mom was loud and disruptive, and the dentist tried his very best to not say "Please don't bring her back here for treatment". Instead, he was so eager to get rid of us that he didn't charge us for the initial consultation, stressing that Mom needed a more "specialized" dental office. He did refer us to another dentist who specialized in dentures (for Mom's Hag Teeth).

When I got Mom home, she was nearly crying from the stress of going to the dentist across the street.

It was at that point I realized at that point that this situation couldn't continue. The medical benefits of getting her teeth cleaned had been eclipsed by the stress and (possibly perceived, possibly real) pain and (real) suffering of the procedure. (And, to a lesser extent, my own stress and suffering.)

I never took her to the dentist again.

That experience, more than any other, drove home the wisdom of the care criteria list our Kaiser social worker had taught me: Any action taken for Mom's care had to satisfy three criteria:

1. Keep her physically safe.
2. Make her physically comfortable.
3. Reassure and comfort her emotionally and psychologically.

Taking Mom to the dentist violated at least two of those criteria. While there are studies showing that dental caries and gum disease are associated with a higher rate of stroke and heart attack, I doubted that at her age, uncleaned teeth were going to harm her physically any worse than the dementia was destroying her, bit by bit.

Sometimes, lying in the chair at my own dentist's office, all of this will flash through my head and a tear will run down my cheek. I have no way to explain this to my dentist or hygienist, other than assuring them that I'm not in pain.

Over.

Jul. 5th, 2014 10:42 pm
On Monday 7/1/14, I was on vacation with my husband in a remote national park that was nearly completely out of cell range. A call came through from a number I didn't recognize. I let it ring through to voicemail, but we didn't get back into sufficient cell range for me to be able to check voicemail for a couple of hours.

The call was from Mom's hospice nurse.

Mom stopped drinking and eating on Sunday, and had a high fever. She was not responsive.

Of course, she chose the one time to rapidly decline that I was several hours away from the nearest airport and popping in and out of cell range. My husband swears that Mom had a sixth sense that I was out of the area.

So my husband and I Had A Long Talk About This. The upshot: I felt I didn't need to be there for her passing. Both of us were (and still are) OK with this.

I spoke with Mom's facility. Mom was completely NOT conscious of what was going on around her any more. She hadn't spoken since shortly after I last saw her a couple of weeks previous...and she wasn't saying more than "OK" or "Yes" or "No" at that point. The administrator admitted that Mom hadn't really increased her interactivity at all since I was last there.

Subsequently, I spoke with one of my two cousins, Mom's only other living relatives, and also with one of my mother's only remaining childhood friend.

We decided to NOT cut short our vacation, because there was absolutely no point to doing so. Mom was housed in a facility dedicated to dementia and Alzheimers, and was looked after by a staff of trusted caregivers I'd been interacting with and observing for a year. She had a hospice nurse sitting with her to ensure that she remained comfortable and pain-free.

The next day, we reached Salt Lake City, where we were to spend just under a week. While taking a nap after being treated for a sinus infection, I awoke to find 2 voicemails on my phone informing me that Mom had passed away at 12:58 PM on Tuesday 7/2. She never resumed talking since I'd last seen her two weeks previously.

As I write this, I'm still in Salt Lake City, having made arrangements for a Bay Area funeral home to keep Mom's body refrigerated for the moment. I've been working remotely with the funeral home to arrange to have Mom's body transferred back to Chicago for burial with my father, which was Mom's very specific wish.

Once that's all done, I can start taking the information I've blogged here and elsewhere, and start working on that book about dealing with dementia that Mom's medical caregivers have all been asking me to write.
The following is reproduced from the flyer Mom's Kaiser Memory Clinic social worker gave to me. You can find PDF versions of it on the web by searching for "compassionate communication liz ayres".  I did not write this, but I've derived enormous benefit from the content very quickly. It is safe to say that the contents of this document created a real turnaround in my head of how to deal with Mom.

Compassionate Communication with the Memory Impaired
By: Liz Ayres
A Volunteer of the Alzheimer's Association and Former Caregiver

DON'T:
  • Don't reason.
  • Don't argue.
  • Don't confront.
  • Don't remind them they forget.
  • Don't question recent memory.
  • Don't take it personally.

DO:

  • Give short, one sentence explanations.
  • Allow plenty of time for comprehension, then triple it.
  • Repeat instructions or sentences exactly the same way.
  • Eliminate 'but' from your vocabulary; substitute 'nevertheless.'
  • Avoid insistence. Try again later
  • Agree with them or distract them to a different subject or activity
  • Accept blame when something's wrong (even if it's fantasy).
  • Leave the room, if necessary, to avoid confrontations.
  • Respond to feelings rather than words
  • Be patient and cheerful and reassuring. Do go with the flow.
  • Practice 100% forgiveness. Memory loss progresses daily.
My appeal to you: Please.elevate your level of generosity and graciousness.


Remember:

You can't control memory loss, only your reaction to it. Compassionate communication will significantly heighten quality of life.

They are not crazy or lazy. They say normal things, and do normal things, for a memory impaired, dementia individual. If they were deliberately trying to exasperate you, they would have a different diagnosis. Forgive them ... always. For example: they don't hide things; they protect them in safe places... And then forget. Don't take 'stealing' accusations personally.

Their disability is memory loss. Asking them to remember is like asking a blind person to read. ("Did you take your pills?" "What did you do today?") Don't ask and don't test memory! A loss of this magnitude reduces the capacity to reason. Expecting them to be reasonable or to accept your conclusion is unrealistic. ("You need a shower." "Day care will be fun." "You can't live alone.") Don't try to reason or convince them. Give a one sentence explanation or search for creative solutions. Memory loss produces unpredictable emotions, thought, and behavior, which you can alleviate by resolving all issues peacefully. Don't argue, correct, contradict, confront, blame, or insist.

Reminders are rarely kind. They tell the patient how disabled they are – over and over again. Reminders of the recent past imply, "I remember, I'm okay; you don't, you're not. "Ouch! Refer to the present or the future. (If they're hungry, don't inform them they ate an hour ago, offer a snack or set a time to eat soon.) They may ask the same question repeatedly, believing each time is the first. Graciously respond as if it's the first time. Some days may seem normal, but they are not. They live in a different reality. Reminders won't bring them into yours. Note: For vascular dementia, giving clues may help their recall. If it doesn't work, be kind ... don't remind.

Ethical dilemmas may occur. If, for instance, the patient thinks a dead spouse is alive, and truthful reminders will create sadness, what should you do? To avoid distress, try these ways of kindness:
  1. distract to another topic, or
  2. start a fun activity, or
  3. reminisce about their spouse, "I was just thinking about ______. How did you two meet?" You might even try, "He's gone for a while. Let's take our walk now."
Open-ended questions ("Where shall we go?" "What do you want to eat/wear/do?") are surprisingly complex and create anxiety. Give them a simple choice between two items or direct their choice, such as "You look great in the red blouse."

They are scared all the time. Each patient reacts differently to fear. They may become passive, uncooperative, hostile, angry, agitated, verbally abusive, or physically combative. They may even do them all at different times, or alternate between them. Anxiety may compel them to shadow you (follow everywhere). Anxiety compels them to resist changes in routine, even pleasant ones. Your goal is to reduce anxiety whenever possible. Also, they can't remember your reassurances. Keep saying them.


Examples:

 
Don't reason.

Patient: What doctor's appointment? There's nothing wrong with me."
  • Don't (reason): "You've been seeing the doctor every three months for the last two years. It's written on the calendar and I told you about it yesterday and this morning."
  • DO (short explanation): "It's just a regular check-up."
  • DO (accept blame): "I'm sorry if I forgot to tell you."

Don't argue.


Patient: "I didn't write this check for $500. Someone at the bank is forging my signature."
  • Don't (argue): "What? Don't be silly! The bank wouldn't be forging your signature."
  • DO (respond to feelings): "That's a scary thought."
  • DO (reassure): "I'll make sure they don't do that."
  • DO (distract): "Would you help me fold the towels?"
 

Don't confront.
 

Patient: "Nobody's going to make decisions for me. You can go now ... and don't come back!"
  • Don't (confront): I'm not going anywhere and you can't remember enough to make your own decisions."
  • DO (accept blame or respond to feelings): "I'm sorry this is a tough time."
  • DO (reassure): "I love you and we're going to get through this together."
  • DO (distract): "You know what? Don has a new job. He's really excited about it.
 

Don't remind them they forget.

Patient: "Joe hasn't called for a long time. I hope he's okay."
  • Don't (remind): "Joe called yesterday and you talked to him for 15 minutes."
  • DO (reassure): "You really like talking to Joe, don't you?"
  • DO (distract): "Let's call him when we get back from our walk."
 

Don't question recent memory.

Patient: "Hello, Mary. I see you've brought a friend with you."
  • Don't (question memory): "Hi, Mom. You remember Eric, don't you? What did you do today?"
  • DO (short explanation): "Hi, Mom. You look wonderful! This is Eric. We work together."
     
 
Don't take it personally!

Patient: "Who are you? Where's my husband?"
  • Don't (take it personally): "What do you mean – who's your husband? I am!"
  • DO (go with the flow, reassure): "He'll be here for dinner."
  • DO (distract): "How about some milk and cookies?" .. Would you like chocolate chip or oatmeal?

Do repeat exactly.

Patient: "I'm going to the store for a newspaper."
  • Don't (repeat differently): "Please put you shoes on." / "You'll need to put your shoes on."
  • DO (repeat exactly): "Please put your shoes on." / "Please put your shoes on."
     
 
Do eliminate "but", and substitute "nevertheless".

Patient: "I'm not eating this. I hate chicken."
  • Don't (say "but"): "I know chicken's not your favorite food, but it's what we're having for dinner."
  • DO (say "nevertheless"): "I know chicken's not your favorite food, (smile) nevertheless I'd appreciate it if you'd eat a little bit."
This is my current "State of the Art Answer" to "I think my _____ has memory problems...what do I DO?"  I will update this document periodically.

My name is Allan, and I've spent a hellish three years taking care of a mother with advancing dementia.


THINGS TO LOOK FOR.

Routine Task Difficulties: The first informal signs of memory problems are difficulties in performing routine tasks. 

In my mother's case, the signal that I didn't know to pay attention to was her calling to tell me, "The ____'s broken." The list of "broken" items got longer with each call, and my visits to Chicago (from the SF Bay Area) became more frequent. This started off as an inability to work the TV remote control. (I have since discovered from multiple sources that this is a common early symptom).

From there, Mom lost abilities pretty steadily over a two year period, including the ability to...

- work a simplified TV remote;

- change batteries in her tabletop radio (which she carried around with her from room to room);

- remember what she'd previously bought, resulting in multiple units of the same item being purchased for several weeks in a row;

- work her computer;

- work the same model of fax machine she'd been using steadily for ten years

- work the microwave;

- balance her checkbook;

- find her way to her doctor's office two blocks away (so she took a taxi there and back instead).

Repetitive Actions: My mother has urinary incontinence, and she obsessed over it to the point where she was buying pads automatically nearly every time she left the house...even though she had plenty of pads in stock. (When I shut down her condo, I found nearly THIRTY packages of pads stored in every conceivable nook and cranny of the house.)

While I didn't find any rotting food in fridge during the condo shut-down, I did find multiple packages of frozen and dried foods that she'd bought without remembering she already had plenty at home.

Repetitive Conversations/Conversational Fixations: If your loved one asks you the same question in a comparatively short time...that's a signal of possible memory issues. Another way this sometimes surfaces is your loved one talking about the same thing over and over and over and over and over and OVER again. 

Increasing Reminder Notes: My mother used to keep all of her appointments in an engagement calendar. Then she started forgetting to put appointments into the calendar...so she started missing medical and dental appointments. To "fix" this, she started leaving notes for herself on the inside of the front door. Then she started leaving notes on the front door AND on her bathroom mirror.

Leaving a single reminder note is normal. Leaving multiple reminder notes plus an engagement calendar entry is not normal memory behavior.

Also...forgetting to take down old reminder notes is not normal memory behavior.

Increasing Injuries: I was mystified that every time I visited my mother, she had bruises and scrapes and cuts. Over time, I found out that she'd "fallen somewhere", and had forgotten the exact where and when. Some of the injuries were due to her not remembering how to walk properly. As time progressed, it became clear that Mom had forgotten how to use her cane, which she eventually just kind of dragged along on the ground as she attempted to walk. 

Fugue Behaviors: I noticed that under stress, my mother started giving the appearance of going into some kind of a mental fugue state, where she wandered around the house looking lost and not saying anything. I nicknamed this her "Mindless Wandering Zombie Cow" face, because that's what she looked and acted like...except I think most zombies moan a lot, and she was pretty much silent.

In retrospect, I'm quite ashamed of my behavior early on in the moving process, long before I'd even heard of Compassionate Communication with the Memory Impaired. During the early stages of getting Mom ready for the move, I worked with her to sort books onto "to be moved" and "to be left behind" shelves. At night, she would start wandering around the house moving books around seemingly at random, undoing or screwing up the work she and I had spent several hours on. I figured she was either faking or deliberately trying to make me mad, and I resorted to yelling at her to break the fugue.

Three and a half years later, I now know that's not what she was trying to do. She was most likely trying to make things look like the mental image in her head, and was almost certainly unaware that she was doing it.  This is why CCwtMI stresses the points "They're not faking, they're not crazy, they're not trying to upset you. They really can't remember." 

I later discovered that in times of stress or when a decision about something is required, people with memory issues will often appear to "fugue out" like this. That's when they need gentle handling, including moving them to a comfortable seat and speaking with them in soothing tones, repeating a question or statement exactly the same way over and over again until they either snap out of the fugue or at least cease the fugue behavior.

Irrational Behavior/Justification/Explanations: The night before I flew her from Chicago to the Bay Area, my mother evidently went into a fugue state while I was sleeping. She woke me up at 4:30 AM screaming hysterically that we'd had a burglar. 

When I awoke sufficiently to question her, I found out that "a burglar" had "snuck in during the night and stolen" all of Mom's packages of incontinence pads.

Glaring at her, I walked out to the hallway where the suitcase I'd helped her pack the night before was lying on its side. Opening it, at least half a dozen packages of pads popped out. (To this day, I have no idea how she managed to close the suitcase lid with that much spring-loaded pressure from packages of pads. I suspect she sat on it.) "THERE'S your f___ing burglar!" I yelled at her in frustration, and tried my best to go back to sleep for a couple of hours .

Memory impaired people will often accuse external agencies or other people of taking or doing things that they can no longer remember doing or observing. One example which I've heard many times: memory impaired people will accuse family members of stealing something that they themselves have thrown away or stored somewhere.

When this happens, the loved one isn't being an asshole. They can't remember, and this is the most logical explanation that their brains can come up with. No matter how absurd their contention may sound to you, remember that to the failing memory centers in their brain, it's perfectly obvious and logical.


LEGAL RAMIFICATIONS TO CONSIDER.

Once your loved one is formally diagnosed with dementia or Alzheimer's, depending upon state/provincial/federal laws, they are very likely to be considered "not legally competent".

Prepare for this now by making certain that the following documents are in order, because once your loved one is considered legally incompetent, doing everything becomes ten times harder when you must go through the courts. Set up these documents now:

Last Will & Testament. Gotta have it, and gotta have it signed before your loved one is officially declared not competent. Gotta have it witnessed by someone who is not named in the will and who is not a family member. (E.G., a lawyer or notary public.)

Power of Attorney. Also gotta have it, or every medical, legal, or housing decision you attempt to make for your loved one will be contested. You will need at least one other person that you trust to be named as an alternate POA holder. 

Healthcare Power Of Attorney / Living Will. The name and scope of this document changes from state to state, province to province, or country to to country...but you need a document which spells out precisely what is to be done medically for your loved one at end of life. The three big decisions which must be explicitly spelled out: 
 
1. Should extraordinary measures be taken if they need to be resuscitated?
2. Should they be kept on life support?
3. Should they be kept alive via tube or IV nourishment?

In California, this is called an "Advance Healthcare Directive", signed by the loved one and witnessed by at least one other person (such as a notary public). Other states and provinces may use a different name. Ask a lawyer.

"POLST" (Physician Orders for Life Sustaining Treatment). This document is signed by the patient (or responsible party) AND the patient's physician, and is kept at home to be handed to paramedics or other emergency personnel in the event that your loved one must be taken to the hospital. 

I suggest keeping the POLST--which in California must be printed on neon-pink heavy paper--taped to the back of the front door (I keep my mother's in a plastic page protector to avoid tearing). There was a similar regional effort called "Vial of Life" which was essentially a POLST like form taped to the refrigerator door.  However, taping the brightly colored document to the inside of the front door ensures that emergency personnel will see it.

The POLST is important because in a medical emergency, your loved one will probably not be able to communicate their wishes to the emergency and medical personnel. 

There is excellent information on the POLST program at http://www.polst.org/, including detailing which U.S. states have POLST programs, and where to get more information.

Meds & Doctors List. This is a freeform document listing (1) all of the medications your loved one is taking, (2) emergency contact information (stating if a contact holds a power of attorney), and (3) contact information for all of their doctors. 

Medication information should list:
 
- Medication name
- Strength
- Frequency of Dosage
- Condition being treated
- Doctor who prescribed it
 
In an emergency situation, the EMT and hospital ER staff will be able to help your loved one substantially faster if you hand them this document first thing. I carry a copy of the current version of this document folded up in my back pocket, to hand to ER personnel at the hospital.

Note: This would also be a good document to put behind the POLST form in the plastic page protector taped to the inside of the front door. Make things easy for the hospital so they can make things easy for you.

I use and periodically update a simple Word document to record this information. It need not be fancy; it just has to be easily readable in an emergency.

Bank Accounts & Stock Funds: Speak with a qualified attorney for your state/province about this, but one of the things that Mom did shortly after Dad died was to put my name onto all of her financial accounts.

For example, she added me as a joint accountholder to her bank account, and her investment accounts all bear both of our names with the legend "JTWROS", which means Joint Tenants With Right of Survivorship. This means that in the event that Mom predeceases me (which is highly likely), these accounts will not be suspended and/or have to go through probate. 

My mother and I also added me as a full joint account holder onto all of her credit cards, so that I would be able to track her account and work with the credit card company if any fraudulent charges manifested. It also meant that I was able to have a credit card issued on her account, but in my name, which I could use for items such as medical copayments, shopping for incidentals, or taking her out to eat. This proved to be much easier than having to track who owed how much money to who for what.

Go Electronic: Right after my father died, leaving just my mother and I (no siblings), I made a point of starting up an email account for Mom and established online accounts for everything...starting with her bank account so I could maintain her checking and savings electronically from anywhere, and adding (free) bill payment.

I also opened up online accounts for all of her credit cards, magazine and newspaper subscriptions, condo association, and anything that might need a bill paid or research performed from somewhere other than Mom's home office. (She was still living in Chicago at the time, while I was in the SF Bay Area.)  I purchased a cell phone for Mom from Consumer Cellular, a very senior-friendly cell phone company (Jitterbug--now owned by GreatCall-- is also a senior-friendly cell phone company)

Doing this made monitoring Mom's finances and supporting her daily activities from a distance very easy for me. When it was time to move Mom, all I had to do was sit down in front of my computer and run through a checklist of vendors/suppliers/accounts to initiate changes of address and service.


WHEN YOU FIRST SUSPECT MEMORY PROBLEMS.

The most important thing to do when you first begin to suspect that your parent (or other loved one) has memory issues, is to TAKE (not "send") them to a neurologist for evaluation. Not their primary care physician, but rather a neurologist specializing in memory issues. That means you (or a spouse or a sibling) must make the appointment and escort her to the office and walk in with your loved one to see the doctor.

Other than being requested to leave the room for her memory evaluation, you must accompany your loved one at all times during the neurological appointment. Seniors in early stages of memory problems will go through intense denial, and will do or say anything to avoid having their own fears of "losing it" confirmed medically. I would go as far as saying: You cannot trust them to give complete and accurate information to a doctor or nurse on their own.

Once you know what's wrong--dementia or Alzheimer's--you can start to plan out what happens next.

If you are a member of the Kaiser Permanente HMO, be aware that KP has a superb memory clinic...but it's not well-advertised. If your loved one is in Kaiser, ask their Primary Care Physician for a referral to your nearest memory clinic. A substantial amount of the great advice given here came from my mother's assigned social worker at a Kaiser memory clinic. These folks know their stuff, and do a great job.


BUT WHAT CAN I DO TO FIX IT?

Uhhh...you can't. This is not something that can be fixed. The best you can do is fight a holding action, with the certain knowledge that you WILL lose.

The harshest and yet most useful advice I've eve received on this subject: By the time your loved one has started to show symptoms of memory loss, be aware that the person you knew is more or less already dead. Oh, the person who's smiling at you from across the table may look and sound like your loved one, but their personality, intuition, and knowledge are slowly being whittled away from the inside. There are still pieces of your loved one "in there", but the complete person you knew is dead. As long as you keep trying to "save" the whole person who's no longer there, you'll be ineffective at taking proper care of them. You must shift your head from trying to "get them better" to "making them comfortable during a terminal situation".

Be aware of a few things:

1. You can't make them better, and they won't get better.

2. You can't stop them from getting worse (even with the drugs, which just slow the progression).

3. There are no miracle cures, such as standing on one's head while eating roasted grapeseeds, or performing special exercises, or doing crossword puzzles backwards. (There will always be someone who will attempt to tell you that memory problems are easily cured "if only you...". THERE IS NO "IF ONLY". Memory problems are not presently curable by medical science. END OF STORY.)

Most everything else that needs to be said is already in the "Compassionate Communications with the Memory Impaired" document, a copy of which I've posted at:


BUT...THERE ARE DRUGS!

Yes, there are, but they don't cure memory loss; they can only slow it down. Don't place your hope on drugs fixing this problem.

There are a couple of classes of drugs for Alzheimer's that can slow (but do not completely stop) the progression:


These drugs are generally utilized in the early to moderate stages, which is why it's so important to TAKE (again, NOT "send") your loved one to a neurology specialist for evaluation and prescription.

Bluntly spoken: to date, there are NO DRUGS OR TREATMENTS which have been proven able to reverse memory loss.


MOVING THEM AFTER DIAGNOSIS.

Your loved one should not live alone any longer. After they've been evaluated by a doctor, you'll need to find a place for them to live that promotes and understands the words "memory care".

In general, there are three types of senior facilities:

1. Independent Living. Some of these offer memory care. Many of them specifically will not accept residents with dementia or Alzheimer's, so you need to use the magic words "memory care" when asking about a place for your mom. These are pretty much full apartments with kitchenettes or occasionally full kitchens that offer a common dining room and three meals daily, plus extra assistance as needed.

2. Assisted Living. Again, the magic words are "memory care". AL apartments usually have minimal individual kitchen facilities.

3. Skilled Nursing. What everybody else calls "nursing homes" or "rest homes". The residents here are largely non-ambulatory, and require assistance for even the most basic of tasks.

4. There is a variant somewhere between #2 and #3, called a "Board & Care". B&Cs are generally large private homes with anywhere from 4 to 10 beds and a large common area with a couple of staffmembers on duty 7x24. Pricing for B&Cs is usually substantially lower than other options. Residents tend to be moderately or fully non-ambulatory, and largely non-interactive, with low to no longer visible cognitive abilities.

My own mother has been shifted over the past three years between multiple facilities, mostly because I didn't understand until after I'd moved her near me from Chicago just how bad her memory condition was, and didn't understand anything about dementia or Alzheimer's.

1. From her own condo in Chicago, I moved her to:

2. An independent living facility in Fremont, CA (Carlton Plaza), where she met a boyfriend who subsequently punched out another resident and was evicted. She begged me to let her move with him to:

3. An assisted living facility in Fremont, CA (Fremont Hills), which turned out to be a huge mistake. My mother was too verbal/vocal for the facility, and she and the facility detested each other on sight. It wasn't a good fit, and I never would have placed her there if it wasn't the only place that would accept Mom's then-boyfriend. My mother was evicted after five months for "disruptive behavior", at which point I moved her to:

4. An assisted living facility in Sunnyvale, CA (Belmont Village) which specialized in memory care. Mom spent a comparatively happy year here, although during this period she literally forgot how to walk (look up the phrase "impulse control" in association with "dementia" for more details), and kept falling with increasing frequency.

Mom's continuing falls led to a chilly note from her doctor, who implied that perhaps I had placed Mom in a substandard facility that was neglecting her. A visit with Mom to the doctor proved that it wasn't the facility causing the falls, it was Mom's memory.

Mom was given Physical Therapy (which didn't work because she couldn't remember what the PT taught her), and continued to fall until she fell one Sunday afternoon and fractured FOUR ribs, which is generally considered fatal for seniors.

Somehow, she survived two weeks in the hospital, was discharged to a nursing facility for temporary rehab and PT, and then I moved her to:

5. A Board & Care which *only* takes residents with dementia or Alzheimer's. It's about $2,000/month cheaper than Belmont Village, and Mom hasn't fallen even once. (They take precautions such as performing bed checks all night long, and also pre-emptively toilet all seniors with incontinence problems in the middle of the night to avoid their getting up and wandering in the dark.)
 
 
There's a long and exhausting discussion I still need to write about the financial aspects of each of the above. Assisted Living memory care can easily run $7,000+ a month, and Skilled Nursing Facilities from $150 to $350 a day, depending upon geographic location. Only Skilled Nursing is generally eligible for public assistance in the U.S., called Medicaid (or MediCAL, in California).

There is a huge list of rules and regulations and qualifications for Medicaid/MediCAL housing, and it's too much information to publish here. In general, your loved one (or your family) will need to pay privately for any memory care until all of their money is exhausted and they have met all qualifications for a Medicaid/MediCAL Skilled Nursing Facility. That means if they're still ambulatory, they may not qualify for Skilled Nursing (and therefore public assistance).

If your loved one or their spouse served in the military during one or more periods of military action (e.g., during a war), they may be eligible for veterans' benefits. However, the periods of eligible are very specific. My father served in the Navy with distinction, but he did so in the period between two "eligible" wars (Korea and Vietnam), so no benefits were available.

Some fraternal organizations (notably the Masons) maintain free or low-cost memory care housing for seniors who were members, or whose spouse was a member.

There are also some religious organizations which maintain senior housing, but rarely memory care housing.


SUPPORTING YOURSELF.

It is imperative that you find a local resource for yourself such as a support group for caregivers of people with dementia and Alzheimer's. This is super-important for YOU.

Please note that all of the really cool stuff I've learned so far sprang from attending my first memory caregivers' support group (staged by the City of Fremont), which is where I learned that Mom's HMO, Kaiser, had a "hidden" memory clinic that did superb work, but which was only available if you knew to ASK for it. (The key words for most HMOs and other insurance programs: "memory clinic" or "memory care".)


WHAT HAPPENS DURING A NEUROLOGICAL EXAM.

At the Kaiser Memory Clinic, my mother and I were split up by the neurologist, who took Mom into a separate room to administer a physical and memory exam, and the social worker, who took me into her office and handed me a copy of "Compassionate Communication" and gave me a rundown on what to expect when caregiving for a parent with serious memory problems.

After the exam was done, all four of us (doctor, social worker, Mom, and I) sat down together and discussed the results of the exam, and worked out an action plan. I then discovered that the reason that we were separated was to keep me from "feeding" information--even accidentally/subliminally--to Mom while the doctor asked her questions such as "What day of the week is it today?" and "Who's the president?".


ONGOING SUPPORT.

I have continued to consult with the social worker, both in person and via email/telephone. I periodically take Mom in to see the neurologist. The Alzheimer's Association website listed at the top of this command has some incredibly useful information if you're willing to take the time to dig through the site.

I hope all or at least some of the above helps, and please let me know if there are any questions I've not answered.


WHAT YOU CAN REASONABLY DO.

In the end, there are only THREE THINGS you can for your loved one:

1. Make sure they're somewhere that she's physically safe, both from themself and from the outside world.

2. See that they're kept as comfortable as possible.

3. Give them lots of love and reassurance on a continual and regular basis.
 
That's it. That's what all of your responsibilities as a caregiver boil down to: "Safe, Comfortable, Loved". Anything that doesn't further at least one of these goals is something you're probably better off not expending energy on.

On the flip side, and unfortunately, the logistics of achieving those three goals can be pretty daunting...hence, my imperative suggestion that you find and attend a caregivers' support group.

Taking care of my demented mother is the hardest thing I've ever done, and I wouldn't wish a similar situation on anyone. It's stressful and disruptive and heartbreaking.

There are no happy endings to dementia or Alzheimer's, so the best you can do is to try to make the journey as easy on yourself and your loved one as possible.

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