Grief, Forever!

I just wanted to clarify after a recent post.
(CLICK HERE TO SEE POST. Opens in a new window.)

Having gotten some new insight into what it is like to live with Dementia/ Alzheimer's, and feeling badly about some of my past behaviors with Gregory because of having not known what I now know, I wrote that, "I will probably grieve until I die."

My niece, who loves me dearly and whom I love dearly in return, send a comment which said, "Heavy.  Grieve forever? ☹️ I hope you can forgive yourself someday.  Greg has."

She and I talked about this on the telephone after I had given it some thought. I thank her for enabling me to write this!

I tried to explain that I have forgiven myself for the most part but when something new comes up, it brings along the next round of grief and therefore the next round of forgiving.

But more importantly, I really do believe that I will grieve Gregory's death for the rest of my life. I will probably love him longer than that if I am correct in my thoughts of the afterlife!

It is NOT like the traditional wedding ceremony says, "Until death do you part." It goes on and on, even after death.

GREAT LOVE brings GREAT GRIEF!

I have previously addressed the idea behind the bland statement, "Grief gets easier." My theory is that because I continue to live (and Gregory does not continue on this physical plane) I continue to grow and become larger in my understanding of life and death. (Not all people are able to do this for themselves!) 

Because I am larger in my understanding of what it means to me to be alive, the grief I carry for Gregory is proportionately smaller! It becomes smaller if only because it is fixed in time and does not continue to grow the way it used to grow when Gregory was alive.

In one way the good times are fixed and get smaller when compared to the continued good times I experience without him. Also the difficult times have ended when every day there were new losses to grieve and to anticipate so they are fixed as well.

Every now and then something triggers a return of grief: a song, a place we visited, a favorite restaurant, a season, holiday, birthday, etc. For a brief period of time (and the time lengths vary with time as well as in intensity) the growth I have made in the past, and "being larger" quickly unravels and I am back to where I was when that memory was fixed in my experience.

Because I no longer exist at that moment, after the brief period of grief's return, I am able to quickly return to my new, larger, current moment in time and continue on. Recognizing the grief and sitting with it helps that brief period of time resolve itself more quickly, sometimes with greater understanding, and allows that memory to continue as either a good one or if a difficult one which has become a better one!

A few other soundbites:

I have learned to carry GRIEF on one shoulder while at the same time carrying JOY on my other shoulder. 

I no longer fear GRIEF, I have learned to sit with it as a FRIEND with a message.

What would it mean about Gregory's and my relationship if there was no GRIEF?

Never tell someone else HOW to GRIEVE or WHEN to stop GRIEVING. 

GRIEF is a very individual activity.

The most you can do to support a loved one with their GRIEF, is to sit there with them quietly. Allow them to TALK if they want to, allow them to CRY if they want to, allow them to REMEMBER if they want to. HUG them if you ask and they agree. You may speak when asked to join the conversation but usually, a conversation about GRIEF is between the person still alive and the person now deceased. 

If you share grief over the same person, it may be part of your conversation as well but you will have to get support when it is your turn. Do not add it "Me too!" to the conversation when it was initiated by the other person first.

Acting as a Guardian

LINK TO DAILY OM

BY MADISYN TAYLOR To act as a guardian to somebody during a difficult time is a most beautiful gift of support. One of the greatest gifts we can give another human being is to act as their guardian. Whether this gift is related to a specific situation or is representative of an ongoing commitment, we each benefit from the association. To protect someone is to walk with them in challenging times and see them through safely to the other side. In doing this, we grow with them. And those under our guardianship derive confidence from our support and assistance, enabling them to persevere through almost any conditions. There are many reasons we feel inspired to serve as guardians to those we care for. Sometimes just holding the space for somebody allows them to do what is necessary to grow or heal. We may simply want to see that our friend or loved one is taken care of and equipped to prevail over difficult circumstances. We may also sense that we are in possession of knowledge our loved ones are lacking yet need in their current stage of development. Our offer to serve as a guardian may also be both unsolicited and unrelated to any one situation. Instead of helping someone we care about cope with a specific challenge, we may find ourselves providing them with a more general form of emotional sustenance that prepares and strengthens them for challenges yet to come. Our ability to empathize with those under our guardianship is our greatest asset because our comprehension of their needs allows us to determine how we can best serve them. Even when this comprehension is limited, however, the loving intentions with which we enter into our role as guardian ensure that our care and protection help others grow as individuals while living their lives with grace.

Revisiting Supporting Gregory

I rediscovered this essay on my computer. The details it discusses date back approximately seven years. Gregory's Dementia/ Alzheimer's was fairly advanced but not nearly as advanced as it was to become. 

Re-reading it made me sad at realizing how much I miss Gregory. It made me realize how much being able to nurture him meant to me (and to him.) It also made me feel good about what a good job I did to support the person I loved so much then, more as his abilities continued to diminish, and at least as much to this day after his death.

The essay ends with "What I wonder is: "Will I ever again be able to live in the moment in which my now and my world is all that matters?" I dread and yearn for that time!" I honestly did not anticipate that Gregory would die, let alone before I did! It just felt like my life in that form would go on forever. Funny how one's mind convinces us that life is forever and that change, while it happens, doesn't!

Thoughts on a Life

Perhaps my success is that I have been able to create for Gregory, a life in which he can truly live in the moment, in which his now and his world are all that matter. 

I have organized our life fully and carefully. This gives Gregory a certain sense of consistency and control and allows me to make sure that what needs to be done gets done, especially because I am the one who has to do it ... all. It allows him to enjoy his life day to day without having to worry about any details.

The purpose of this essay is not to brag about how much I do, to say look at me, but rather to show you what must go on so that Gregory can live in his moment. How often have you stopped to think about all the things you do to run your life and that of your loved ones? These thoughts on what it takes for us are mine, shared.

Gregory wakes up, cleans up, and puts on his morning "Sweats" which I laid out the night before. He has breakfast, which I assemble and put on a tray, including cereal with bran buds, fruit, and soy milk; a glass of orange juice; yogurt; a mug of tea; a few prunes, apricots, and dates; a handful of assorted raw nuts; and on alternating days - sausage, Canadian bacon, or tinned fish on crackers. On the days he can, he cleans up after breakfast but usually leaves several things on the counter, not knowing where they go. On the days he cannot, I take over.

Then Gregory sits at his desk spending several hours with the New York Times, which I have arranged to be delivered every day. My idea to do this was successfully based on the fact that Gregory still reads, likes his news, but is no longer able to navigate his computer (we used to get the newspaper on-line.) I kidding call this concept "using a brand new technology" since we have never had a newspaper delivered to our door before this."

Some days Gregory can select what he wants to wear, other days I have to help. He is not easily able to relate a temperature number to the season to what kind of clothing to put on. Sometimes I have to notice that his underwear is on backwards. Sometimes he attempts to put on two pair of jeans so I help him through. Often he forgets his belt, which confuses him about where to hook his cell phone and keys.

So far he can still make a large salad for his lunch. I help when he gets confused and on some days clean up after him. Often we plan a lunch out around our errands. He always goes with me because I cannot leave him home by himself any more but also because we continue to enjoy each other's company. I decide what he will order as well as what I will order for lunch (same for dinner out for that matter.) I used to ask: "Do you feel like having meat, chicken, or fish tonight?" That no longer works so I just decide. Usually he "goes on" about what a good choice I made and that makes me feel good.

Recently I put together a process for "interviewing, letter of applicationing, background checking, and letter of agreementing" a Companion to spend time with Gregory. I created a process for this with which I was comfortable and which insured the Companion's, Gregory's and my "rights and responsibilities." Part of this includes a brief history of Gregory's dealing with Alzheimer's, what the Companion might encounter, and how to deal with it.

I currently have two college students acting as Companion, each of whom spends 4-8 hours a week with Gregory. This enables me to get out for a meeting or appointment when I have to leave Gregory home alone but also gives me some free time away from my 24/7 responsibilities, just to be able to go out and "play" by myself or with friends.

The interesting part about having a Companion is that I feel like a mother with a young child having to add to my "duties" scheduling, planning, thinking ahead, dealing with actual and potential Companion late arrivals, illness, cancellations. But it has been working well. Gregory has been enjoying the company of "young blood" which provides a different environment for him than having me around 24/7. So this seems to be working well for both of us.

I plan and prepare dinners at home, set the table, serve the food, dress and salt and sauce what needs dressing, salting, and saucing. I turn on the music we always have at dinner, deciding Chopin, Beethoven, or Sting. After dinner I clean up, sometimes Gregory will dry, I put things away, wipe and "daily spray" the granite counter.

He will ask, "Can we have a little something?" referring to watching a saved TV show, or a NETFLIX movie. I decide what we will watch and run the TV/DVD controls. I make the popcorn or cut up some fruit to have during intermission. After watching a DVD, I put it back in its envelope returning it to sender.

I select an assortment of chocolates for him to have at bedtime. He loves his chocolates! I suggest when it is time to take a shower. I put out new towels when needed. I point out toothbrush and toothpaste when he gets confused over their use or location. I remind him to put on body lotion and help with the parts he cannot reach. I apply the cortisone treated tape to a few areas on his hand and leg that have begun to show psoriasis.

We turn down the bed together after I have brought our water glasses in from the TV room and put his nighttime meds in a small bowl on his night table as well as putting tomorrows out on the kitchen counter. I pull down the shades, turn off the lights, check the thermostat, make sure the front door is locked, and set the alarm (to wake me in the event of his wandering in the middle of the night.)

We read for a while and then lights out. Sometimes he can figure out how "on/off" works and other times I have to pop out of my side of the bed to go over and turn off his lights. The nice ending to every night is that we fall asleep together holding hands.

Of a day, bills are received, reviewed, and paid. Mail is collected, sorted, and handled. Same with e-mail. Birthdays are remembered, as are important anniversaries of family and friends. Great nieces and nephews and GodChildren are gifted on their birthdays, at Christmas, on graduation, at confirmation, when bar (or bat) mitzvah, and eventually will also be gifted if they choose to marry and have children.

Household equipment is maintained, serviced, repaired. Walls are washed, erased, or touched up with paint. Clocks, thermostats, and timers set. Laundry sorted, washed, dried, folded (sometimes Gregory helps with the folding but I have to double check because he mixes up the variously sized underwear and sox.) Our housekeeper is instructed, directed, and at times corrected (we are grateful for her help.)

Refrigerator, pantry, and larder are stocked and a running list created so everything needed is remembered. When one thing is used up, another is in waiting, and when taken off the shelf has its name added to the running shopping list. Meals are planned executed and eaten. Dishes are set, cleared, washed, and stored.

Friends are e-mailed, telephoned, chatted with, entertained, joined for dinners out. Parties are planned, invitations sent, R.S.V.P.s received, menus planned, food purchased and prepared, buffets set, food replenished, drinks poured, dessert served, clean up accomplished. When we get together with friends, I tell my stories and I tell Gregory's stories. He enjoys hearing his stories told since he cannot manipulate the words to tell them himself.

A pair of reading glasses has been located in each room, labeled for ease of redistribution when Gregory inadvertently looses or moves them around, and new bedtime books selected when he needs a new one.

Doctor appointments are made, symptoms checked out, lotions applied, cuts covered, bruises watched. Dentist cleanings, eye examinations, skin doctor, neurologist appointments made, driven to. Information is discussed with doctor, results listened to, actions for the future remembered and taken as needed.

Again, the purpose of this essay is not to brag about how much I do, to say look at me, but rather to show you what must go on so that Gregory can live in his moment.

•  •  •  •  •

When he wonders about later today or tomorrow, he asks as well as he can (language difficulties considered,) and I tell him again our plans. He will reply with "Oh Goodie" or the like. Often he asks again or is surprised when the plans take place. This periodic wondering seems to be enough for him when it comes to regarding the future.

The past comes up now and then. It is a little more complicated as usually it causes a guessing game about what he is trying to remember. After thirty five years of living with and knowing him, we usually are successful in remembering. Sometimes, not!

Perhaps my success is that I have been able to create for Gregory a life in which he can truly live in the moment in which his now and his world are all that matter. The problems and confusion of dealing with Alzheimer's Disease/Dementia arise when I ask him to live in my world or our world or when he tries to live in our world and then stumbles, feels confused, and sometimes gets frustrated when he realizes that he is no longer able to do so. I am continuing to learn how to avoid this but am not always successful. I am continuing to learn how to live in his world but am not always successful.

Things he knew how to do yesterday, he does not necessarily know today, and may or may not remember tomorrow. I never know what to say or not say, to ask or not ask, to wonder or not wonder. I never know if he understands what I mean when I ask him to help me with something. Using words like above, below, in, out, over, under, etc. are a crap shoot. As mentioned in a previous post, I do not know which is worse: when he doesn't understand something or when he thinks he understands something. 

Life continues to be a thin, thin line between trying as much as possible to live our life as normally as possible ... or better ...  to help him live his life as it is normal to him. Life continues to be a thin, thin line between treating him like a five year old while at the same time respecting him as the 64-year-old adult he is. He senses the difference and when I am able to do so successfully he doesn't mind. When I am a little impatient, he gets a little short with me. Can you blame him?

Every night before he goes to bed, he recites aloud the three words he read in a poem and had me print on a post-it to put on the side of his night table drawer: Simplicity, Patience, Compassion. As I hear his repeating his mantra, I recommit myself to being as good of a caregiver partner as I possibly can be.

What I wonder is: "Will I ever again be able to live in the moment in which my now and my world is all that matters?" I dread and yearn for that time!

Revisiting Peaceful The Bear

Last night I was thinking about Gregory's bear. I think that of all the wonderful things I did for Gregory; to help make his life with Alzheimer's safe, comfortable, and as enjoyable as possible ... the bear was the best thing I ever did.

It got its name, Peaceful, when one day I was at Lieberman watching Gregory sleep while holding on to his bear. I wondered to myself, "When people with Dementia/ Alzheimer's sleep, are they at peace?"

Peaceful became a form of communication for Gregory. When sad he would hold the bear, once I captured a photo of him "crying into his bear" and being comforted. Another time I saw him, in anger, toss the bear across the room. It helped Gregory express that anger and then he was OK. Peaceful didn't mind!

Peaceful became a mascot of sorts for all of Lieberman. It was with Gregory wherever he went including down to the community room for concerts and other entertainments. People would greet the bear, inquire after the bear's health, and ask to hold the bear.

I purchased four (4) identical bears so that in the event of one becoming lost, or needing to go home with me to be washed; Gregory would always have his bear. At one point two bears went missing and one was at the condo spending time in the washer and dryer, and Gregory still had his bear to hold and to love.

When the bear would go missing, or as I called it "off on an adventure," he always found his way home via housekeeping, the laundry staff, Resident Care Assistants, and even at times the Social Worker or Head Nurse! Gregory's name was on the ribbon but I believe most people knew where the bear belonged and returned it to Gregory without much trouble.

Gregory just loved that bear. He would hold it while watching TV or listening to music. He would stroke it unconsciously and seemed to enjoy the feel of its fur.

 

The bear was always with us and helped celebrate birthdays, holidays, and other occasions. At Chanukah, Gregory donned a red scarf so he would look festive, like Peaceful with his red ribbon bow.

Peaceful celebrated Halloween. Gregory and he passed out a huge bowl of Trick or Treat candy to every department at Lieberman. Peaceful went dressed in his clown costume.

Gregory loved going outside to sit in the sun. Peaceful would always come along to keep him company. When preparing to go outside, Manny or I would gather Gregory's hat, his sun glasses, a bottle of water, a few treats, and if it might be chilly a jacket. We always made sure not to leave Peaceful behind.

 The photo below was taken by God-Son Isaac of Gregory in the second day of his coma and the day before he passed. You can see that Peaceful was on duty, as usual!

When Gregory died, all four Peaceful's were in place. I kept one, one went to friend Susan O'Halloran, one went to a nurse as a remembrance, and one was left at Lieberman for the other residents to continue holding and loving. If Peaceful could tell you his part of this story, I wonder what he would say?

I love my dentist. Often this love/lust/friendship is at the bottom of the list until a problem surfaces, then he pops to the top. And he is always there for me when I need him. Cavity, tooth-ache, cracked crown, tooth extraction, root canal, bridge. I've had 'em all. Some several times.

Lust comes in when the pain is so bad, usually beginning during the middle of the night, my choosing to wait until the office opens, that I yearn for his attention.

My preference is to stay in the chair as long as it takes. I bring my music (in the olden days a boom box and now my iPhone) and sometimes I will be his only patient for the entire day! Much better than going back how many times?

And as much as I love and value my dentist, sometimes I am in awe of how much money I have turned over to him, his office staff, his overhead, his family, his kids, their college funds. Oh well. Well worth it!

P.S. I might add that I brush often, floss, and Waterpik ... but the germies get me anyway!

Beep ... Buzz ... Ring!

Amazing how our electronics have come to support our busy life style.

The HOUSE PHONE WARBLES when someone wants to talk to us, it BLURBS when a voice mail was left with the service, and FLASHES when a message is left on the unit itself. It serves as a doorbell when the doorman calls to say someone has arrived to visit.

When you want to FORWARD A CALL on the house phone, you wait for a DIAL TONE then dial *72 and hear a BLURB then dial the number you want your calls forwarded to, which in turn RINGS the forwarded number. When you cancel the forward you get a DOUBLE DIAL TONE.

The CELL PHONE RINGS or plays a RINGTONE (read MELODY or SONG) when someone is calling, CLICKS while you are talking if someone else calls, BEEPS when you have missed a call, BLURTS when a message is waiting.

The MICROWAVE OVEN BEEPS and the readout says “Your food is ready!” If you do not respond, the oven continues to BEEP every 30 seconds or so. When preparing the microwave to warm or cook, for each number, each command, each start or stop you enter, the oven BEEPS at you.

If you use the MICROWAVE OVEN TIMER, you get more BEEPS, when entering information and when timing is completed.

Our COFFEE MAKER BEEPS three times when the coffee is finished brewing and BEEPS five times when the maker automatically turns itself off.

Our WASHER and DRYER SQUEAL. The washer SQUEALS when your clothes have finished their washing cycle. You cannot open the washer door until it has announced itself. The dryer SQUEALS when your clothes are almost finished drying (in case you want to take them out to avoid wrinkles) and SQUEALS again when the cycle is fully finished.

The FURNACE CLICKS and the thermostat lights up when you touch the buttons to increase or decrease the heating or cooling.

The building FIRE ALARM SIRENS horribly when someone or something has activated the alarm. Then a live VOICE from “Command Central” lets you know to relax or to evacuate!

The SMOKE DETECTORS and the CO2 DETECTORS WAIL when they detect that which they are meant to detect. If you do not change the batteries (you should do this every October) then the units CHIRPS at you until you do change them or until the batteries are totally worn out.

Several of my WATCHES will DING on the hour, half hour, or at a time of your own choosing. 

Our GRANDMOTHER’S CLOCK, an antique from Helen, does it’s DING - DONG - DING - DONG, every fifteen minutes and on the hour GONG - GONG - GONGs for each hour.

The GENERAL ELECTRIC OVEN will BEEP when it has reached its pre-heating temperature, and if you set the timer, it will BEEP when your food is done cooking. There is also a TIMER on the oven that will BEEP after the hours and minutes you have set are up.

The GENERAL ELECTRIC GLASS TOP RANGE will BUZZ if you have locked the knobs so children cannot turn on the burners by accident.

The TOASTER DINGS when your toast is ready. The TOASTER OVEN DONGS when it is finished.

My MACINTOSH COMPUTER has the potential to HERO, MAGIC BELL, MORSE CODE, PING, POP, PURR, SOSUMI, SUBMARINE, TINK, or the ability to RECORD YOUR OWN ALERT!

The HEWLETT PACKART All-In-One PRINTER will PERK at you when you enter any information, it will PERK  when you receive or send a fax, PERK when you scan, PERK if you make a copy, PERK-reduce, PERK-enlarge, PERK-reverse, PERK-rotate, PERK-reset, PERK-program, PERK-auto dial, PERK, PERK, PERK.

Finally, how about those LEDs? I have counted fifteen of them just from where I am sitting working on this essay! I am afraid to count how many LEDs in the entire apartment. Amazing how our electronics have come to support our busy life style.

BEEP! BUZZ! RING!  Wait, wait, what needs my attention now?

January 5, 2008