Adventures in Alzheimer's Land...

(Caveat: No two Alzheimer's experiences are exactly the same; this one was ours. - Jay)

Photo credit Edvard Munch - "The Scream" 1893

“ALZ-LAND” as seen vicariously
Through the eyes

of an Alzheimer’s Caregiver…

...

I had a dream...

I have this feeling that I need to go somewhere. I’m not sure why, what’s there or where it is but I’m driven to go there. Let’s call it “home.” I thought I almost had an actual address last night but now I’m not sure if that was perhaps an address from some long-ago memory. Everything I see is new, strange, bizarre sometimes. Strange girls in one house taunt me, sometimes with lewd gestures. One man appears to help me by giving me directions but even that doesn’t help if anything he tells me doesn’t relate to anything I know about. He says, “Just go over there, gesturing, to “Maryland” and then go that way“, gesturing again. I think, “Is he sure? That doesn’t look like the “Maryland” I remember.“ I see several names on street signs but they don’t seem to have any rhyme nor reason or any theme or order that I think they should have. Even the street numbers seem out of whack. I know I haven’t been traveling that long, how can I be so far away? And even if I keep going in the direction I think I should, I always seem to be getting farther away.

Something grabs my arm from behind, makes the hairs on the back of my neck stand on end and sends a chill down my spine. I dare not look because I know it’s too frightening to see. Sometimes I feel frozen. I want to run but my feet won’t move, I want to shout out but my voice won’t come. Suddenly I remember the night before when I was working with my Dad on some projects on the roof. He looked very good for having been deceased for three decades.


Sound familiar? (I hope not)
Am I another one suffering from Alzheimer’s/Dementia?
No I'm not - but I've lived with one for more than thirty years. The above narrative simply recounts many parts of a recent dream that I had, more accurately, a nightmare. I have a similar dream now and then. The specific visual scenarios are always different but the general theme is always the same; Lost, Frightened, Desperate, Confused. Could I subconsciously, perhaps empathetically, be importing my mates dreams or, again more accurately, her reality?

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First Encounters of the Weird Kind -
My first encounter with AD came around 1980. My own “mid-term memory” is a little suspect. Specific details of certain events escape me. I’m not sure that I was even familiar with the terms “Alzheimer’s Disease or Dementia” at that time; I just called it “old and goofy.” I was returning to my boyhood home for some reason which escapes me. My father had passed away a few years earlier and I vaguely remember attending his wake but do not clearly recall the funeral or burial. At any rate, this particular occasion had to do with visiting my step-mother “Aggie”. We were never very close. She had to put up with me in my adolescent years until I left home to “see the world” at the age of 18. I’m sure that I was a “problem child.“ So I flew into town, after being gone for over twenty years. I recall driving to a hospital and seeing to the release of Aggie from there. From the hospital we drove downtown; Aggie wanted to stop by her bank for some reason. I escorted her into the bank and waited for her there. I have no idea what her business was at the bank or what she did there.

From the bank I think we then drove to the cemetery and looked at my dad’s grave for a little while. I‘m thinking that this was the first time that I had seen it. Perhaps not; I may have blocked out the memory of the funeral and burial. From the cemetery we drove home. This was the home where I had lived with Aggie and my dad for a few years while finishing high school. We probably watched some TV and settled in for the night then; her retiring to her bedroom and me going upstairs to what used to be, my bedroom. Around 2:00 am I was awakened by a commotion downstairs. I came down to see Aggie standing there in her soiled undergarments talking to two police officers about how she, “had no idea who this man was and that he was trying to steal her money.” I assume that she had called the police.

Well, I guess the police figured out what was going on. The rest of what I remember is kind of fuzzy. I recall Aggie’s niece, who lived nearby, arriving soon afterwards and more or less taking care of Aggie from then on. I flew back home the next day. The home was subsequently sold by the bank; Aggie was sent back to a care facility and passed away not long after that. I never returned. That was my first encounter with Alzheimer’s Disease.

My next encounter was with my darling bride “Dee”. Dee was always a little “feisty”; moody one would say but fairly normal I think. I liked her that way. A “fighter”, not going to take anyone’s crap. She did have a family history of bipolar disorder which I learned about late in our relationship and which concerned me a little bit. We had been married and together for about thirty years when one day, Dee woke up from a mid-day nap completely confused and disoriented. She had temporarily lost her equilibrium, was bumping into things in her bedroom and could not remember the names of things. She would gesture to the dresser, the bed, the closet and these were all just “things.” “This thing and that thing.” I remember thinking to myself, “Jeepers, Alzheimer’s couldn’t strike suddenly like this could it? Like a bolt of lightning out of the blue?” Well after a while Dee regained her composure but I think her behavior was never quite “normal” after that. A few years later is when I became her full-time caregiver as her ability to perform the functions of daily living decreased severely.

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This is a story about “Dee” (my bride) and “Jay” (me). We were both born in the Midwest USA about six months apart in age and about 350 miles in distance. Little did we know what life had in store for us. Howard Hughes had just set a transcontinental air flight record and Amelia Earhart disappeared on one of the last legs of her round-the-world jaunt. Joe Louis defeated James Braddock for the World Heavyweight boxing title and one year later won the title again in one of the most famous and politically-charged fights of all time, “Louis vs. Schmeling.“ The ill-fated Hindenburg rigid airship ended it’s trans-Atlantic flight in a flaming disaster. (“Oh, the humanity.”) Despite these propaganda setbacks, Adolph Hitler was well on his way to infamy, determined to save the world with his Grand Plan.

On the home front, gasoline and some foodstuffs would soon be rationed and metal would be salvaged as the U.S. joined the War effort in Europe. Dee gave up her tricycle for the metal in it. Dad got a job as a timekeeper at a defense plant and Mom put her education to work as a R.N. The Iceman came once a week and he could tell how much ice you wanted by the sign in your front window. Milk was delivered to your doorstep in glass bottles with cardboard tops by the Milkman and the Coalman came when you called him. He backed his truck up in the yard beside the house and dumped his load of coal down your coal chute which led down to the basement where the coal bin was, next to the furnace.

But enough of nostalgia...that was then and this is now.

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CAREGIVING 101 -
I was asked by a young lady who is soon to be caring for her husband with EOAD (Early Onset Alzheimer’s Disease), “What did you find was the hardest part of care giving?” That’s a tough question; it‘s hard to pick just one aspect that would be the hardest. I guess I would have to say that “toileting“ would rank right up there as one of the most unpleasant aspects if not the hardest. The initial aspects of toileting are not too bad. This would be when they still are mentally and physically able to use a toilet as one normally would. This still requires some vigilance in the area of “after-wiping”, “hitting the target”, re-dressing and hand-washing. At one point I had to duct tape the toilet seat cover in the UP position after a rather messy episode of “going” with the seat cover down.

You see, you can take nothing for granted and I mean nothing. As the Alz patient continues to lose their cognitive skills, the whole world is a brand-new place to them each and every day, each and every minute actually. Things, procedures, rules, if you will, that are learned early in our lives and are second nature to us “normal people”, no longer apply in “Alz-Land.”

A side note in the area of toileting: This would also fall under the category of “Things that they do sometimes that astound you.“ One day I noticed that a fresh roll of toilet paper had been installed on the holder. I knew that I didn’t do it and so I asked Joe (staying with us) if he did. He said that he hadn’t either. That meant that Dee must have done it. When I think of ALL the complicated details that entail the simple act of changing a toilet paper roll, and to think that she actually did it…well it just “blew me away.“

To continue, once “incontinence” sets in things get a little more, shall we say, intense. I delayed using “Depends” a little longer than I should have and spent much time emptying, rinsing out and laundering fine under garments. Once we started using the “adult diapers”, they were disposable and saved a bit of hassle with the laundering part anyway. Still the diapers were not the “hold-all-cure-all”. As “emergencies“ became more and more frequent, I spent a lot of time doing bedding once again and spot-cleaning the carpeting and thoroughly cleaning the bathroom floor. If medications taken sometimes tend to induce constipation OR diarrhea then it becomes even more intense.

One of our trips to the ER (Hospital Urgent Care) was for (not sure what you call it) impacted colon? Before going I tried everything I could think of including a “Fleet” enema. Anyway after an X-ray at the ER they said that there wasn’t much they could do and sent us home with a bottle of Magnesium Citrate. If you’ve never had any experience with this stuff all I can say is, “Handle with care and be prepared.“ It’s a small bottle, maybe 8 ounces, has kind of a citrus taste and you should drink the whole contents. I’ve had experience with this stuff and half a bottle is fine for me, thank you. It’s a fast acting (I mean FAST) and thorough laxative and the effects may go on for hours if not days.

On the other end of the spectrum; diarrhea, well that entails a different sort of abdominal distress for the patient and just becomes, let’s say “a poopie marathon” for the caregiver.
Later on, once your Loved One becomes more or less bedridden, well that‘s a whole new ballgame. I was amazed later at the Home, when I watched the pros go through this procedure. With years of training and experience, not to mention way more physical strength than I had, the CNAs made it look easy. Boy what I wouldn’t have given to have had a standard hospital bed and the proper protective under-pads. Anyway you do what needs to be done with what you have. They need to be changed of course, preferably as soon as and as frequently as necessary. Then they have to be cleaned thoroughly, washed, dried and powdered maybe. Fresh diapers put on and, of course, if bedding has been soiled, that will have to be cleaned and changed as well. If you’ve had children, think back to changing your baby’s diaper - same thing only this baby is much bigger and heavier. Don’t be put off or alarmed at the crying either.
Have some empathy - how would you feel if someone had to do this for YOU?

I can’t stress enough, the vigilance required in prompt changing and thorough cleaning. This is especially important with female patients as they are prone to get UTIs (Urinary Tract Infections) if left unattended too long. UTIs can, not only be hard for the lay person to recognize but can also play havoc with every other aspect of the person’s well-being (moods etc.).
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Forgive me, I digressed on the “toileting.“ Getting back to the question; “what is the hardest part?“ Keeping track of and administering medications - Bathing - Feeding - Dressing - Social Isolation - Lack of any significant physical help from family -Taking care of yourself. These are all “hard parts” of the caregiving experience. BUT…none of these compare to the constant struggle to rise above and block out the extreme sadness of this affliction. The overwhelming feelings of helplessness and despair as you watch your loved one slowly slip away physically and mentally, never again to be the person that they once were.

Maintaining a cheerful and positive attitude...a stiff upper lip during what has become known as "The Long Goodbye." THIS is by far the hardest part.

The Nursing Home Experience

For most of those caregiving for a loved one with Alzheimer‘s/Dementia, the thought of placing them with strangers in a “Nursing Home” is dreaded. I know it definitely was for me and so I thought it might be helpful to some, and perhaps therapeutic for me, to relate my experience.

Let me say at the outset that, contrary to my fears, “placing” was one of the best decisions that I ever made.

I guess I’ve been fairly fortunate throughout the entire experience in that many of the minutia of particulars involved seemed to fall into place automatically. All the stressful thinking about “How?, When?, Where? and How Much will it cost?” turned out to be wasted effort. Actually the decision about placing in a “Home” (Long-Term Care Skilled Nursing Facility) was made by a Doctor. He was her case-worker at a local hospital where she had been taken to the ER after the EMT’s that I had called determined that she was “failing to thrive” and should be transported to a hospital for further examination and treatment.

Some background information is probably in order. Let’s go back about three years. Dee had always been a feisty soul. A “Tomboy” to be sure and “Class Chatterbox” in school. Not the most pleasant of lives, she had suffered both physical and emotional abuse throughout much of it. All of a sudden, after thirty years of marriage, granted some of them perhaps a bit “rocky”, she decides she wants to sell the house, get a divorce, hates me and “never wants to see me again.” She wanted to live alone. (A pleasant thought in hindsight is that she probably knew somewhere inside, what the future had in store and did not want to put me through the anguish.) But does this sound like rational thinking coming from a 69-year-old woman with no car, no job, a very meager social security income and unable to balance a checkbook?

Well, I guess I wasn’t thinking clearly at the time either and by this time, somewhat fed up with her “feistiness”, I reluctantly agreed. I went on my own and (by group consensus, unable to really BE on HER own) she moved into a two-bedroom apartment with one of her four grown sons. As it happened he also had no particular place to go at the time and also had experience as a CNA which seemed at the time to be a bonus. To make a long and horribly painful story short, after one year they were both penniless, didn’t have the next month’s rent and by this time it was obvious that her faculties were becoming even further diminished. Unable to bear the thought of seeing her as a “bag-lady” living on the street, I once again entered her life. I took charge of her finances, which were in shambles, and we moved what was left of our “stuff” into a two-bedroom apartment and “lived happily ever after” right? Ha ha ha…sure. Oh, and by the way, to keep "things" legal, we DID get married once again in an informal civil ceremony. Towards the end of the ceremony, when asked, I replied, “I DO,“ she answered, “YOU BET.” Classic Vegas style.

Thus began my PART-TIME caregiving experience.

Having been “downsized” out of a life-long graphic arts career, I had been working part-time nights in security as a ”rent-a-cop.” The extra money was crucial for monthly payments on those “never-going-to-be-fully-paid” credit card bills. This worked out fairly well for a year or so until it became painfully obvious that Dee could not be left alone for any period of time. By this time her cognitive decline had worsened to the point where she could not function with a telephone as in “to call 9-1-1.” And thus began my FULL-TIME caregiving experience. I had to quit my job and within a year declared and was granted bankruptcy relief, thus alleviating some of the financial stress.

The details of full-time caregiving are almost too painful to go into here. Let’s just say they ran the full gamut from dressing, bathing, toileting and feeding to constant and stressful vigilance. Those of you who are caregivers know that it takes incredible stamina, physical strength and skills which you eventually and sadly realize you do NOT have. On Thanksgiving afternoon, 2008 I reluctantly called 9-1-1. The EMT’s had been there twice previously to help lift Dee off of the floor and to place her back into bed. (I did not have the strength to do this by myself) By this time her major and minor “motor skills” had been severely diminished. (walking, standing, holding a spoon).

So here we are…fast forward to the “placing.” In the hospital ER it was determined that her “vitals” were all acceptable but she was dehydrated, probably under-nourished and had a urinary tract infection. We were enrolled in one of those “El Cheapo” HMO’s and so the physician in charge used two criteria for placing her in a care facility; (1) what was available and (2) what was in keeping with our Health Plan. She ended up in the middle of the night being transported to some “rinky-dink” place twenty miles outside of town. Well actually, aside from the horribly inconvenient distance, the place was alright. I was just happy to get her to a place where she could get the attention and care that she needed.

In addition to our health plan which we had subscribed to for 30 years, we both were eligible for Medicare. I had previously applied for and been granted Medicaid for her. The initial Medicaid application was for Home-Care assistance but was easily transferred to Institutionalized Long-Term Care once that became necessary and thankfully, the Medicaid took effect just in the nick of time. After a few days in the Care Facility I was contacted by a Hospice organization and also signed on with them. They were to provide “additional eyes and hands” over and above the Long-Term care staff to oversee her well being. Of course Hospice cares for terminally ill patients and so their outlook is a bit on the dreary side. But they do a good job in preparing family and such for the inevitable.

The daily 45 minute drive to the Home (sometimes twice daily) for visits was getting exhausting. And so I began in earnest to search for a closer facility. The Welfare worker had given me a list of a dozen or more possible sites. After checking out many of them I finally narrowed the search down to three. Then came the next hurdles; pre-admission screening and bed availability. Again, after 2-3 agonizing weeks, I got lucky.

Two of the three called me within a day of each other and said they had room and we were good to go. And once again, God looked down and smiled upon me and said, “Here old fellow, check this one out.” As it happened the one I settled on was one that I had not even physically reconnoitered at first. It turned out to be the best on the list. I have to say that with over 200 locations nationwide, this facility was far and above beyond all my expectations.

A few days before Christmas, Dee was transported, again at night, across town in a “Medical Transport” as I raced ahead to be there when they arrived. The “Discharge Summary” and arrangements for transport were incidental nightmares also endured but all worked out in the end. With a heavy sigh of relief I looked forward to the, now, ten-minute drive to visit. Subsequently, as our lease expired at our apartment, I was once again blessed to find a wonderful “age and income restricted” one-bedroom apartment practically across the street from the Home. Now I’m down to a two-minute drive. (“Age and income restricted” - translation: old and poor. But it’s nice, very nice.)

Continued in…The Nursing Home Experience - 2

Jay

The Nursing Home Experience - 2

What to expect at a long-term-care facility:

Prior to admission I toured the facility and found it to have quite a pleasant atmosphere. The grounds were nicely landscaped and very well kept. First inside were the reception desk and front offices. Then you proceed into the heart of the facility. There is a common dining room for those who are able to use it, a library, activity area, lounges and TV rooms, beauty shop, gift shop, access to a semi-enclosed outdoor patio area for smokers and finally, on each wing, the central nurse’s station and the rooms themselves.

The rooms had a “homey“ feel with durable carpeting on the floor and drapes on the window. There was talk, during our stay, of doing away with the carpeting sometime in the future. That will be a shame if they do but that’s just my opinion. Private rooms can be had but are quite expensive I‘m sure; standard are two-to-a-room. Usually there are several “halls“ or wings with one of them being a “lock-down area“ for patients who tend to wander. The particular room that we occupied had a West-facing window, a private in-room toilet/sink facility, closet space, dressers and side tables for each bed, an under-the-window, wall-mounted, air-conditioner and a small color TV.

I was once again fortunate in that I was offered a choice between two “female beds“; one with a roommate who also had cognitive impairment and the other with a lady who had her mental faculties about her but suffered from COPD, a respiratory condition. I chose the latter, feeling it might be better and I‘m glad that I did. In three months, roommate “Babs“ grew to become very fond of my Dee and acted as yet another set of eyes, ears and helping hands in troubling situations. Occasionally Dee would twist herself around in her bed so that she was near sideways with her legs dangling and her feet touching the floor. Babs would “buzz” the nurses station and soon a nurse or a CNA (certified nurse’s assistant) would come and re-position her.
Since this area did not have “in-the-wall” oxygen at this time, Babs had a portable oxygen-making machine beside her bed. It was a little noisy but not too bad. Besides the 24/7 presence of a RN, there were also a number of assistants on duty around-the-clock.

A physician was on call and would come around once weekly. The hospice nurses and CNAs would also visit 2-3 times a week as well as a hospice Reverend for spiritual counseling and guidance. In that regard the Home also had church services available weekly and of course, in the activities area, regular bingo sessions. The level of care was extraordinary and left nothing to be desired. Showers and/or bed baths were given 2-3 times a week, meds were dispensed routinely each day as prescribed and other special care was given as required; vital signs taken, blood pressure, blood glucose levels, temperature and body weight closely monitored.

Food was prepared on a “likes-doesn‘t like” basis and if the patient is immobile, brought to the room at bedside. Not having her teeth or dentures, Dee’s food was prepared in an easy-to-chew format. If unable to feed themselves they are then hand-fed by a CNA. I was present most days at many of the meal times and fed Dee myself. Sometimes it became very frustrating for me when she was non-responsive and eventually I left the feeding to the professionals and would visit just before or just after meals. Records were maintained in a percentage figure as to how much food was or was not eaten at each meal.

“Wake-up Time” comes early in the nursing home. It’s not unusual to see patients up and about by 4:30 am. Those who are ambulatory are sometimes assisted and encouraged to mingle in the hallway for “socialization.“ Many, however, are far from socializing; more like in a stupor, some slumped over and fallen back to sleep again in their wheel chairs. The main gathering spots would be near the nurse’s station or outside of the main dining room. A coffee cart is available before breakfast and breakfast is served between 7:30 and 8:00 am.

Also around this time, the “Med Nurse” is busy getting ready to administer morning medications. She has a wheeled cart with dozens of drawers holding hundreds of different medications for the patients. A grinding tool is used for some of the solid meds which are usually mixed in a small cup with apple sauce to help make them more palatable. Liquid meds are given in small cups. Med dispensation is very time consuming as you can imagine. In extreme cases, some patients receive up to a dozen different medications. Meticulous records are kept on each patient and occasionally some intense prompting is necessary to get the patient to take and actually swallow the medication. Dementia patients have been known to spit them out. Also performed in the mornings are “vital sign” readings for those that require that. Patiently waiting your turn for your morning meds can sometimes be a time of high anxiety, especially if they are needed pain meds or meds for breathing assistance.

Since Dee had been bedridden for more than three months, one of the high points of our nursing home stay was when “Teesha”, one of the hospice CNAs, gently lifted my Dee up and out of bed, placed her into a special PCV “shower chair”, wheeled her out of the room and down the hall for a real sit-down shower. I was so happy to see that, I can’t tell you how happy I was. Of course, Dee fussed and fumed loudly over the jostling and moving about but once all settled down with drying, body moisturizing and hair brushing you could tell that she was happy as a Lark. Sadly, there were to be only two or three more sit-down showers.

Concluding all that I can recall about the nursing home experience, I can only say that my hat’s off and my extreme gratitude go to the staffs of these facilities. I can’t speak for all nursing homes of course but in my experience at the one we were at, your loved one is truly given the very best in Tender, Loving, Care.

Jay

All The Things She Said

Well not ALL the things she said but at certain times I felt the need to jot down some of the things that she said to save for posterity. I will relate some of them here. Keep in mind that these quotes are taken from a period of several months during the latter stages of the degeneration of a person’s cognitive impairment. Sometimes clear and lucid, other times making no sense whatsoever. Some are lengthy, some very brief. Also keep in mind that this person is enduring multiple sensory hallucinations; that is to say auditory (hearing things that others do not hear), visual (seeing things that others do not see) and tactile and olfactory (feeling things and smelling things that others do not feel or smell).

I did not make note of the dates on most of these so I can’t relate to any chronological order in which most of them were made. Also many of the notes were scribbled rapidly and I will do my best to decipher my scrawls and relate them verbatim the best that I can. “Someone” would be very irate if they knew I was doing this. She would say, “That’s stupid - those people are stupid.” (All the rest of the people in the world) “Talking to strangers - that’s stupid. (What we do or say) It’s none of their business.”

Anyway I think it has some value, perhaps not, time will tell.

Quotes:

“I don’t understand you…are you really a person?”

“So you took ‘em like this - poop pop pop - OK look, I’m gonna pull this up and you’re gonna do it. This is no good (pants) - when I say I want this that means I want it not krebble in a pile of skid. Oh God, go away, you are an idiot. You’re gonna have to do it in four parts then and then sew it together.”

(There was a large, heavy, down comforter normally on her bed. The predominate color on one side of it was red. Many, many times she would tear it off and place it at other odd places around the house. This next quote relates to a time when it was piled in a corner of the bedroom on the floor.)

“I walked into my bedroom and the comforter and something made me say, “Hi Dad.” I don’t know why I said that, maybe I’m going to die. I’m not trying to make you feel bad, I just don’t know why that came to me. No I don’t feel like I’m going to staff (?) but I miss my father. Do you ever think of all of us and remember how we were? And uh…the red in the comforter reminded me of when Dad went to the store…how I walked in to Dad’s office - he’s working on something and I said, “Hi Dad.” I’m not crazy, I just like my Dad. (crying) And I always liked you cuz you were my best friend. Don’t worry I’m not gonna croak but maybe God wants me now. I know my God - He’s always been good for me - gave me great kids - it was just a dumb thing that happened - I dunno.”

Funny stuff -
“Are you married? I like you. Do you have a car?”

.

She once asked roommate Babs, “Do you have a boyfriend?” Babs replied, “No I don’t.” to which Dee said, “ I have a boyfriend, you can share mine.”

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On a Thursday in late Sept. or mid-Oct. 2008
One of her other grown sons, “Joe“, had been staying with us for a while. First while recuperating from a bad staph infection and then later because he had no place better to stay and it was also great to finally have two able “bodies“ on board. For a time at least this allowed me to leave the premises periodically for errands, etc. Joe had gotten a job and on Thursdays we would all go in the car and take Joe to his job office to get his paycheck. We had done this several weeks in a row for a month or two. Well, this day we got her all ready; clothed and shoes on (shoes were always a problem). I went and brought the car around, closer to the front door so she wouldn‘t have that far to walk.

We started to assist her walking to the car and I don‘t know what got into her head but all of a sudden she vehemently refused to get into the car. Maybe she thought we were “taking her for a ride to The Naughty-girls Home.” Anyway, after several moments of pleading and prodding we finally gave up. Joe would take the bus another day - tomorrow. With Joe on one arm and me on the other, we turned back towards the front door and started to take her back inside. Suddenly she goes dead-weight-limp on us and collapses down to a heap on the sidewalk. We panic, can‘t lift her and she offers no cooperation so I run in the house and get a pillow and blanket.

I come back and look into her eyes which looked like they were rolling upwards.

.

I grab my cell phone out of my shirt pocket and hit 9-1-1. The fire department medics arrive first, about five minutes later (what sweet guys). I should mention at this point that Dee‘s cognitive impairment by this time had gotten to where she could MAYBE tell you her name but there was no way she could tell you what day or year it was or what city or state she lived in. So the medics get there and with her still sitting on the sidewalk they begin their pre-evaluation. One took her vitals and another began asking her questions. I‘m not sure but I think I told him what her name was.

He asks, “Dee, do you know where you are?” She says, “Sure, I‘m right here.”

.

I thought that was hilarious. Subsequently she was transported via paramedics to the hospital and admitted to the ER. I had to assist in getting a urine sample there and that’s a whole other story. “Clean-up on aisle five.“ Anyway after a few hours the Doc says that she seems OK and “there’s nothing that a stay in the hospital could do for her.“ Towards nightfall we get released, I assist her down the hall and out the front door and - get this - she follows me out to the car in the parking lot WALKING UNASSISTED, we get in the car and drive home uneventfully.

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Not so funny stuff -

Wandering and the saddest thing I ever heard…
It’s a common occurrence in the later stages, for the person suffering AD or dementia to “wander.“ This, of course, is highly undesirable and could be very dangerous. There are electronic devices available to alert those who are caregiving in the case of wandering loved ones. Long-term Care facilities have special “lock-down” units to accommodate those who tend to wander. It’s also common for the person with AD to hear voices. Many times these voices are those of long ago deceased parents or relatives.

Dee never was one to wander much. It was my thought that she so feared anything outside of the front door that she dared not go beyond it alone. Although she did wander one time out of the front door and down the sidewalk as far as the driveway (about 25 feet). It was there she met the gardener and burdened him with the story about these two men inside who were being mean to her and asked if he could help her. He didn’t understand a lot of English and her English was even harder to understand. So very quickly, with her standing there in her underpants, Joe and I gently coaxed her to come back inside, convincing her that we were no threat and were really on her side.

She would sometimes wander throughout the apartment late at night, often talking to her imaginary associates; occasionally becoming very belligerent with them. She would also often sit up in bed in the middle of the night with a start, saying loudly, “What?“ She would usually say this a few times; I’m sure it was in response to an auditory hallucination of her mother calling her, i.e. “Dee, come home now, it’s time for your piano practice.“ or, “Dee - come home, time for dinner.“

The saddest thing that I ever heard and hopefully, this will be the last time I ever think about it again was when she got up out of bed one night and was wandering around the apartment, dragging her blanket behind her. I was awake of course, and heard her cry out in a soft, wistful voice, “Mommy? ……Mommy?“
This just broke my heart and still does. I hastened to her side and did my best to comfort her and help her back to bed. My salvation now is to quickly think the thought that she and her Mommy are happily together now. That makes the memory just slightly more tolerable and that’s all there will ever be said again about that.

_______________________________________

Other not so funny stuff -
(Dated Saturday morning, March 15, must have been 2008)
“What’s going on? What the hell is the matter with you? Get out of here you dirty rat. Why did you do that to me? I don’t wanna go anywhere. They’re mean. These men were awful - they killed me - I’m afraid. It’s people who do that - they hurt people. I don’t like that. Will you stay by me? I don’t have anything there when I’m with you. Did I hurt you? No? Oh good. But I’m all cold now. I was silly on h (?). I said I was bad.”

(This next one is very graphically garbled but I’ll do my best.)
“Did I give you that thing yesterday?“ Do you want the rest of it Honey? (a cigarette)
“They should be up there - don’t the kids get more? Do you want to put this together? Didn‘t you want to put a makalaka laka there? Little tiny things - cute - can I look at it?” (my notes) “How do you get that for here - I never got that. Can I make one of these?” (a cigarette)
“Who‘s that?” (a gardener outside making noise). “I can’t do it cuz it doesn’t work for me - you know when you go through? Why do you always do that?” (write notes)
(Takes the freshly lit cigarette out of the glass ashtray and places it on the cloth placemat)

One morning I’m awakened at 3am with, “Sir, can you help me?” Apparently she had gotten up to pee, taken her panties off completely and had put them back on with both legs through one leg-hole and pulled them up to her waist. Obviously this is uncomfortable and very tight fitting to say the least…she had done this a few times before. So I helped her arrange them correctly and we were good to go. She thanked me.

Later I’m told that, “I never usually ask men, usually I just say “get the feck out of here”.”
“Why are you doing this to me?…How can you do this to me?…You never loved me…You never loved my children…You only wanted my money…Don’t come in here please…(in the bathroom where I often assist her with toileting)…Will you take me home?…I want to go home…Get out of here, you’re so mean…You have never done anything for me…I never want to see you again…You’re a monster.”

“My beautiful man, I love you so much…I need you…I can’t live without you…This is perfect…I’m so happy…You’re so kind, I don’t know why…."

(Talking for the first time candidly and lucidly about Alzheimer‘s Disease)
“It’s such a horror…who does this to me?…what is it?…I know who it is…it’s that bitch…(one of her son’s girlfriends?)…I hate having people feel bad for me….It’s that bitch and she goes around laughing, laughing, laughing…Can I have something sometimes to help people? (she likes to help people, especially children)…It’ so sad…can you help me?…”
(“You know that later you won’t know who I am.”) (weeps) “Am I going to die with this?” (“yes“) I’m not going to be lovely…I wonder why I left everything…well, maybe God wants me to go…I don’t want to go but, you know…oh well. I wish I had big fingers. I think I’m ready, I really do. And u know what?…when our friends go before us we get mad at them. I wish I had much more left…don’t you?…you’re beautiful though…I love you. Is that OK to say? Don’t go. You’re so kind…thank you very much…thank you for loving me…I love you. I’ll have to see you later maybe…I don’t want to go without you…you’re my best friend. I hope all my friends remember me. I know that I was just a little snot sometimes…but I don’t do it.”

“Jeepers. I still feel that all my friends are here and why am I going somewhere? I’ll try to do everybody. I don’t want to live here. I really don’t…cuz I didn’t like it before. We never have all the friends we want… all the girls and all the boys…Right? I think I gotta poop. It’s not fun. I love you…I hope you are nice to me… I know you will…I’m gonna get you because you’re mine. I’ve always looked at you and I’m so happy. Can’t I have a little time? You’re so cute. You’re my pal.”
(“The good part is all your friends will be there… your brother, your mom and dad.…the bad part is leaving all your friends here.” ( mutual weeping). “Maybe I only have one day…I dunno…but I want to be with you. Oh God. Oh my God, look at that man…you’re my honey…I love you…do you love me? Oh gosh….you’re my boy…remember that…I love you so much. Maybe I’ll be alone….(“Not as long as I’m with you.”)…I want that. Maybe God’s playing a thing with me. But if you are you and I am me then we're good…we're better than anybody. Thank you so God. I think my father did (had) that, you know? You make me so nice…thank you God. You’re beautiful…(“So are you.”)…no I’m not but thank you…I don’t want to live without you.”

“I wish we could get out of here.” (This later came to indicate intestinal discomfort followed by a hasty trip to the toilet - sometimes making it there, many times not.)
“Did you ever taffle the fiddle git it? - Oh they’re beautiful.”

(While attempting to assist donning a sweater with very little cooperation)
“ I wish you’d stop have him do me not.”
“Just like a puke fark…I couldn’t do that - it just went down in my feck.”

There are just a few more but they’re too garbled to interpret.

And the very last four words that she uttered before slipping away into unconsciousness. Looking directly at me with those beautiful brown eyes and speaking clear as a bell…

“I love you forever.”

Jay

In Loving Memory -

Born in the Winter of 1937 in the Upper-Midwest to proud German and Polish parents; Dee was baptized and christened in the Roman Catholic faith. The youngest of four children with three older brothers. She would tell of being “one of the boys”, a true “tomboy”, of her escapades with one of her brothers and of often getting into trouble with Mom. She loved her Grandmother dearly and slipped away to visit her as often as she could, especially savoring Grandma’s home-baked pies.

She and her young friends loved to play tricks on grown-ups. They would be walking around the busy downtown shopping area, stopping suddenly, they would all look upwards and stare. Then they would giggle when many of the passersby would look up also. Her and her friends had a thing they called “foreign-talk.“ They would speak loudly in public using gibberish words and then chuckle to themselves as the passing shoppers gave inquisitive looks and wondered what they were saying. “Jigga-wagga”, was her favorite personal word that she always claimed to have made up.

Before retiring at around age 62, Dee worked hard all of her life, a small portion of it as a “single mom” before she met and fell in love with Jay in 1973. Much of her career was as a cashier in various commercial enterprises and later in clerical positions in the field of engineering. She was a proficient typist. She lived in a Midwestern suburb when she and Jay first met. Not long afterwards in 1975 they took the vows of Holy Matrimony and settled in the high-desert Southwest of the U.S. It was here that they lived together for thirty-three years, both working much of the time to make ends meet; Jay as a graphic artist/printer in the hospitality industry.

She was a very good cook with beef and pork “chop suey” being one of her preparations favored by all. She also loved to read, work outdoors in her garden and at a late stage in life began to play piano once again after a hiatus of nearly fifty years. Her memory of her childhood lessons served her well as she was an extraordinarily gifted pianist playing primarily her classical favorites, Beethoven, Mozart and of course, the Polish genius Chopin, her most favorite.

Personality-wise, Dee was a classic example of a “Dr. Jekyl and Mr. Hyde.” If threatened or provoked she could be mean, vicious and hateful. She could lay waste to the world’s strongest man if she felt that he threatened to harm those that she loved; she was very caring and protective. On the other side, one could not find a more gentle, generous and loving human being on Earth.
She loved children and especially babies; babies both human and animal. She very often kept dogs and cats as pets and loved them all dearly.

In early 2005, poor Dee was diagnosed with an illness known as “vascular dementia,” a neurological disorder in the broad spectrum of Alzheimer’s Disease. Specifically called, “fronto-temporal dementia" (FTD). With partially blocked arteries, oxygen-rich blood failed to reach certain parts of her brain and she subsequently began to lose many of her cognitive skills. Losing her short-term memory at first, followed soon thereafter by a loss of reasoning ability, speech and finally both major and minor motor skills (standing, walking, holding things); an inability to perform the tasks of daily living without assistance. Jay attempted to care for her in the home for a time but eventually it became obvious that more skilled and professional assistance was required.

On Thanksgiving afternoon, 2008, Dee was admitted to the hospital emergency room with a diagnosis of “failure to thrive.”
Thus began her fairly short but comfortable existence in a Long-Term Skilled Nursing Facility. Here the staff very soon grew to know her and love her. As with most Alzheimer’s victims she continued to have “good” days and some “not so good” days. On Friday April 3rd she was “up and about” sitting upright in a rolling chair while Jay and one of her sons pushed her gently up and down the hallway of the Home. She was smiling, happy and seemed eager to see all that there was to see outside of her room. A true wonder to behold as, up until a week or so before that, she had not left her bed for more than three months.

Four brief days later she was administered auxiliary oxygen, had not eaten nor taken fluids for several days and in the late morning of Wednesday, April 8th, 2009 she very peacefully, painlessly and quietly, simply slipped away.

She leaves survivors, on this earthly plane; two older brothers, her beloved spouse Jay, five loving children; three adorable grand-children; and an infant great-grandson.

So it was, that the Good Lord looked down upon my darling Dee and said,
“Come, take My Hand and go with Me dear child, your time is finished here.”

May her beautiful Soul and Spirit forever Rest in Peace

in the Personal Heaven that she envisioned.

"Hic est fini." - Jay

______________________________________________________________

.

Edit - 05-04-09 -
- To whom I owe a great deal of gratitude -

.

Our HMO Health Plan people…
http://www.seniordimensions.com/

.

For resources in services for the elderly…
http://aging.state.nv.us/
.

The Alzheimer’s Association for respite care advice…
http://www.alz.org/index.asp

.

The Nathan Adelson Hospice for grief counseling and added care…
http://www.nah.org/

.
Life Care Centers of America, whom I can’t thank enough…
http://www.lcca.com/

.

You and I, the Taxpayers and the U.S. Govt. Medicaid program…
http://www.cms.hhs.gov/home/medicaid.asp

.
Other sites of welcome advice and online companionship…

http://www.knowitalz.com/

.

http://www.simplesite.com/AlzheimersAwareness-Hawaii/7697641
.

And all the wonderful folks I met and shared “war stories” with at…
http://www.alzinfo.org/alztalk/home.php

.

Dear Mother Mary…
http://www.simplesite.com/mothermary
.

The Incredibly Knowledgeable Marcus…
http://www.simplesite.com/Marcus
.

Everything you ever wanted to know about Caregiving…
http://www.caregiver.com/

.

The Local Fire Department and the private EMTs, the Hospital,

the Medical Transport guys and anyone I overlooked who helped along the way...
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My nightmares are over -
I feel somewhat of an urgency to bring this “Memoir” to a close. I’m sensing a bit of apathy creeping into my world view. It may be a sign of things to come or, more likely, just a resignation to accept things the way they are. I seem to feel a need to shift my attention elsewhere. This and the fact that it’s becoming more and more difficult for me to re-visit and to re-live, so to speak, these experiences.
By the way, the recurring nightmares that I had been having, which I mentioned at the beginning of this, seem to have stopped. I find it so fascinating how the human brain/mind/ spirit act in such mysterious and wonderful ways.
Some have suggested that I publish these writings in a “hard-copy” format. Perhaps I will…we shall see. At any rate, thank you again for taking the time to peruse my ramblings. I do hope that you were able to take something of value away. Please feel free to contact me if you wish. My E-mail address is posted here in my profile.