Next Up

It's been awhile since I thought too far into the future. Caring for an elder means you live in the moment and that is where we have been for the past 8 years. Living day by day, week by week. Today my horoscope says to fantasize about a thrilling adventure you will have one day; and imagine who you want to be three years from now. I am pretty sure I still want to be me but a less worried version. In fact I am less worried these days, work is better and my general outlook continues to improve. I used to worry about losing my ambition and sinking into the couch like lost change. But dammit if I didn't get happier and then I started getting ideas again about doing things and making things and it turned into some kind of medicine for my poor tortured soul. I have actually been toying with a 5 year plan again which I have not done for some time. The last one came around the time of a grand-mal seizure I had in 1991, the same night Rodney King was beaten senseless by the Sylmar police. I lived in Sylmar then, what were the odds? I was stressed out and exhausted. My husband at the time was in the throes of some horrible anxiety disorder that made it impossible for him to leave the house. I lost my drivers license as part of the fall-out of the seizure and the one thing I needed him to do—drive me around—he could not do. I needed a plan so I made one. I concocted it late at night when I lay in bed afraid of falling asleep waiting for my brain to fail me, it involved moving away from my comfy job as an Art Director at A&M Records to create a life that was a mix of what I had known growing up in rural Canada and a car commercial that was playing on TV in 1991 for Isuzu, that involved a guy driving down a mountain side to get his mail. This spoke to me and so the 5 year plan took shape. It actually took about 4 years to realize but let's not split hairs. In the ensuing years things have happened in 4 or 5 year increments. This year marks 10 years that Mark and I have been together and 15 yrs since my mother died. So I am looking ahead. With Eddy no longer what we are planning around in the short term we can turn our minds to what we want to do next and it feels good and light despite the sadness. I have no answers yet, just some broad strokes and loads of ideas that I am not holding onto too tightly, rather I am watching them flip and fly and entice me to keep moving forward, coaxing coaxing.

The Quiet Room

In the quiet room there is the sound of the oxygen pump and Mark mistakes it for the pattern of Eddy's breathing and worries it is slowing down. We stand around Eddy's bed and pet him, his chest and legs, and his head. Occasionally Mark pets his cheek. At first we don't know what to say and the nurses are there swabbing out his mouth and turning him in the bed and then realizing they need to change his gown that is wet with sweat they ask us to step out and we do. In the common area there is a dog lingering between the water dispenser and an open office and a man comes out and goes in and the dog changes from bored to attentive and then back to bored. People wheel by in wheelchairs wearing socks with grippy pads. Some people sit listening to music, some people just stare. A woman I saw crying at one of the many dining tables one day is today folding clothes, over and over. We go back into the quiet room and continue our petting and stroking and quiet weeping. We talk over Eddy and to Eddy and around Eddy and eventually we put on music and we all sit down and forget about Eddy and then we take turns looking over at him. From where I am sitting I can see his pulse in his neck expanding and contracting against the white white pillow. The lights are low in the quiet room and the decor makes it seem like you are in a cottage at the beach, in Greece. If you were on morphine this would all be believable. You could easily tune out the pumping sound of the oxygen and the sound of the fan and all the sounds coming from the front desk of this vast building filled with other afflicted humans who can no longer care for themselves. You could focus instead on the voices of the people you loved most in this world even if you had no ability to understand what anyone was saying, the pumping sound might register as waves lapping on a distant shore. No one asks questions about how long it will be until we arrive at the place we are all going and the day passes and we come and go from the quiet room, and later in the evening after we have all gone home, Eddy dies. And that is where we are now. This is the day that we knew was coming but we didn't know how and we didn't know when and yet here we are doing exactly what we knew we would need to do.

Not much.

This is all I can safely say. Tuesday I begin writing the novel in earnest and I can't talk about the story to anyone. I have to hold it close to my breast like a sacred object. In the meantime I will try and write about other stuff like the freakish chickens I am raising and our rising sadness about Eddy who is now living in care and knows it isn't right. We're all dying but his case is more acute. To tide you over here is a picture of me with my new love interest.

Episode

It was 45 minutes before he began to be responsive. We ate our hamburgers because we didn't know what else to do and they were cooked. One of us would get up and check on him periodically. The time passes slowly and initially you are calm and do what has worked in the past, but then more time passes and we began to think maybe this is it, this is how it ends but you don't stop yet, you keep reacting just in case. We were moving around the house not really talking to one another but in our minds we were both concocting strategies for what to do. Eventually the ER was the answer and that's where Mark took him, only by the time we called an ambulance and arranged to meet them just inside the Canadian border he was coming around, nicely. He squeezed my hand when I asked him to but would not speak. In the car as they pulled out of the driveway I waved at Eddy and he waved back, like nothing was wrong. He was fine but the trip to the emergency could not be aborted and so Mark kept on, making up for the other times when we did not take him perhaps. At midnight they were back home and we were there to meet them, having cleaned up the dinner dishes and crossed the border into Canada, with the dogs and everything else.

At the doctor today Eddy sits looking down and we talk about him like he isn't there, but he is there. He looks mad at times, and scared at other times. He says very little or nothing. We learned from the doctor that when he has one of these episodes we need to elevate his feet. This is good simple advice and it makes me feel empowered for when this happens again. Mark is not so sure and he requests a change to some different meds to try and avoid the seizure all together. We went years without any of these episodes and now they are quite frequent. His state is precarious, his circulation poor, he is slow to respond to much stimulus, he is forgetting how to eat, but he's alive. So we go along with him moment by moment, ill-equipped as we are, our resolve propping him up. It's all we can do.

Eddy

Holy cow. I have to make this snappy. Had so many plans to make some drawings and paintings, in particular a painting of Eddy. He is not well, he is not himself or he is a new version of himself, we're not sure. Mark has been caring for him now for close to 8yrs and we think he had a stroke some weeks ago, but he seemed to rally and we thought it was a cold and he got better in a few days but now he is slow again and he just seems glum which makes us glum too. He's near the end of the line and I think he knows enough to know that he's really confused and weak and not a player any longer, not even close. It's distressing to all of us. Because he is weak his bathing schedule has been disrupted which in purely mechanical terms is tricky. Mark had to give him a sponge bath at the kitchen counter because he would not wake up long enough to get into the shower. It's tough on everyone but toughest on Eddy. We don't take him to the doctor for these things, our approach is practical, sympathetic but also realistic. What if he had cancer? We'd probably let it go. I suppose it's palliative care that we are providing. Mark is softening with him and we talk about just meeting him where he is, going easy on our expectations of his abilities and awareness. He was better yesterday and we were able to get him through the shower. And so it goes one day at a time.

Weekend Update

It's been a tough weekend in suburbia. Eddy is deeply under the weather which is very concerning. For me it raises all sorts of issues about how long can we go on looking after him if for example he began to refuse to walk. He likely just has a common cold but even the most simple ailments in the elderly can be a big problem. His weight had gotten a bit low and we had started to get that under control when he began to slow down at the table. He forgets he is eating and stops and sits staring at his food like he has no idea what to do next. He often says this, what's next? A loaded question. His usually cheery demeanor has vanished and has been replaced by a strange look of fear and concern. He doesn't feel well and he knows this but to him it must seem more dire. He won't talk much and is slow to respond when he does which drives Mark crazy.

We took a few walks over the weekend to different places as a way to calm our tired worried nerves. We went down into the deep ravine below the powerline in Abbottsford but it was an uncomfortable place to be. It's very treed and the trail is winding, they are a few ner'-do-wells who potentially hang out there so instead of feeling relaxed I felt sort of scared and vulnerable. Probably will skip walking there in the future unless we're armed. (hah) On Sunday we went up to the Dyke which was better. I ate my samosas while Mark threw the ball for the dog at the rivers edge. We walked a good distance along the trail and it felt better but we still mostly talked about Eddy, if we got off the topic Mark brought us back with his concern, saying I hope the old guy gets better.

My feeling is that he'll be okay, he might take a little while to get back to his baseline. The tough thing is with each illness he becomes more checked out. We just have to take it as it comes, we have no plans for the future beyond the next few weeks. We'll keep Eddy home until he gets better, even the routine trips to my place can be tough because the set up there is so different. So we'll visit here a bit more often and see what happens.

Confused

Eddy is confused and emotional today. When I went into his room, he asked me if he had been sick or if he had something wrong with his memory. He is laying in his bed in what must seem like a strange room even though it has been his for 5 years. I tried to reassure him and fill in some of the blank spots but he could not remember my name immediately or who I was. It's upsetting to see him this way at odds with his normal complacent state, it's distressing and sad to hear him articulate what he is feeling rather than just always answering in the standard affirmative when you ask him how he is. It's just hard to see him curled up like a little child, on the verge of tears asking me questions about the most basic points of his life. It must be shocking to have someone tell you, that you're 81 and realize you have little recollection of what you have done in all those years without substantial prompting. At the edge consciousness, we think we know where we are going and where we have been, but there will come a time when it will all feel like a dream. Merrily, merrily life is but a dream, and off we go gently down the stream.

Charm and Good Looks

We wake Eddy up early on Fridays. He goes out on a bus to an adult daycare place where he mixes with other old codgers, he gets a bath while he is there too. Often when we wake him up he is a bit confused and often thinks he is dreaming. Today he said he was just lying there and while he was willing to accept where he was he had no recollection of what he had done to get here. I told him he had done it based on charm and good looks. He said he was willing to accept that too.

Still Life with Eddy

Eddy, getting loaded onto the bus

On Fridays Marks's dad Eddy goes out to a place called Maplewood House near our house in Abbottsford. It's primarily a care home but they offer adult daycare, Eddy has been going there for about 4 years. This morning when I got him up to go he was filled with questions about this weekly activity of which he maintains no memory. Today he wanted to know if it was a fashion oriented activity or if it was for craftsmen. Did he need to bring tools with him and what would he return with. He asked repeatedly if this weekend activity was religious. I reminded him it was Friday and it was not religious. Eventually he got around to asking if it was men only or mixed men and women. At one point he asked if it was "bisexual" which gave Mark and I a good laugh. We corrected him on his word choice and of course he was quick to assure us he was more interested in the ladies. He wanted to know if it was bilingual or english only. I am sure there are a few old dutch codgers there too but with Eddy you have to be careful about what information you introduce into his loop. He wanted to know how he got there, and he did have some information in his vault because he was able to ask if he went by bus or by car. A small bus comes to collect him. So off he went on his weekly odyssey that, upon returning home, he will have no memory of. In fact he won't remember that this place is his home either. Fortunately he remembers us and the dog so he never seems to feel lost just confused.

I like these mornings with him when he is lucid and aware. Mostly he spends his time quite withdrawn and silent, it's fun when he is animated and curious about his situtation. Today he kept asking if Mark and I approved of this activity. I told him that we heartily approved and this seemed to give him real pleasure.

Risky Business

Eddy is home and getting stronger. It is not happening by accident, Mark is really focused on Eddy's ability to get up with assistance and walk the 25 or so steps to the bathroom. At the moment he can only walk from the bathroom door to the toilet. We wheel him from his room to the bathroom door. There is risk involved in getting him up, he could fall. His skin is phyllo dough thin and his nerves are fragile, the bathroom is made of hard objects with sharp corners. Occasionally you have to take evasive action to get him to his destination. He yips and oohs, it doesn't feel good. His legs can give out, he can sort of lose interest in what is happening and can topple over. He has fallen, but not often, he has never been hurt. When he finally arrives back in his wheelchair he always thanks us for safe delivery, no matter how rough the trip.

The greater risk lies in not getting him up, letting him lose all connection to his body, forgetting to walk. All those brain pathways getting covered over like old dirt roads. There was tremendous perceived risk in assisting him through his day but we brought him home anyway and slowly he is returning to his original semi-marginal state as we hoped he would. Our commitment is renewed to keep at him, to walk and move around despite his strenuous complaints and missed synapse. Trying to keep him moving until the end, that is the goal. None of this is easy, it's heavy and it feels awkward, sometimes it's scary but generally it feels like the right thing to do.

Risk is unavoidable, the key is to know which risks you're willing to take.

Home Soon

Eddy, Mark and Luna in the Acute Elder Care Ward

We brought the dog into the ward yesterday to cheer Eddy up a bit. I am not sure if it made a dent in his glum but he did recognize her. Today he stops the antibiotics and we hope it brightens him up because he is still really bummed out. He stares at us like he wants to tell us both off with our assanine optimism. He's been doing the exercises with Mark but very grudgingly. Mark meets with a physio rep today and hopefully she can see that he does know what he's doing and the proof is in how much stronger Eddy is after the last 5 days of therapy. We have a lot of mixed feelings of course about the hospital experience but mostly we feel strongly that keeping Eddy out of care is preferable for all of us.

Hospital Stay Day 7

Eddy at the big house

Eddy has been in the hospital for a week now. He went in last Tuesday with a high fever and has been transferred to Acute Elder Care. I am trying to stay positive but it's challenging. So much of getting better depends on the sick person themselves to feel hopeful that they will recover. Eddy is not happy, he is not speaking much to us and I am reading his mood as angry and fearful. His dementia keeps him in the present so it's hard for him to recall the information about the infection he has. He can't look back at the days and see that he is feeling better as we can. He just feels the way he feels in the moment and he can't feel great. He still has a slight temperature but is off the intravenous medication. Other smaller problems are developing as well as a result of being bedridden.

We found out a few days into his stay that his own Doctor does not have hospital privileges so we have had to rely on the ward Doctor's and RN's for answers on his condition and it's all been vague and frustrating. Test results take time, the infection spread to his blood and we are not sure where it started, was it the urinary tract or the lungs. He is getting good care but I wish he was home in his room where the dog could lick his hand and he could look at his maps and pictures as he faded in and out. Instead he is in a detail-less sterile room mostly on his own, wondering why he is there and worrying about whether he will ever leave.

Better Today

I woke Eddy up yesterday morning and he seemed pretty cheerful initially but by the time Mark went in to say good morning he was in tears. He couldn't say why except to say he felt really sad. Home care arrived and Mark and I left for the day a little heavier with worry for Eddy. He is in this precarious state of awareness and, well dementia. He grasps what he has lost and those are unbearably sad days. We had a terrific sail, in a way in homage to the once strong Eddy. By the time we got home he seemed fine and today when I woke him up he was his normal cheerful slightly confused but lucid self.


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Scrabble

I've been meaning to see if Eddy can still play scrabble. Despite his dementia and perceptive inconsistencies he has retained his large vocabulary and his ability to spell in English and French. He is good at crossword puzzles as long as he is only required to answer the questions and not have to read and fill in the tiny squares. His motor skills can be erratic or non existent. Sometimes he just forgets he meant to move. We got the board set up, Pearl determined who would go first and we set up the play order. Me first, then Pearl, then Eddy. Pearl designated me the score keeper. The game went like this; Pearl and I would take our turns then Eddy's turn would come, one of us would ask him if he had a word to play, he would look at the board and start to de-construct what was there, seige became neige, sail became mail. He could see some words in his tiles but could not link them to the board. Pearl and I took turns taking his turn for him, double checking with him the spelling of the word.

A game of scrabble can last a pretty long time. Mark mowed the whole lawn and did some trimming while we soldiered on. I started cooking dinner and Pearl wrote down a few scores. By the end Eddy was listing a bit, his blood sugar was low and he was really struggling to make sense of the game. His eyes looked watery. We had completely pooped him out. I can't remember who won, we all ended up with a few extra tiles, rogue consonants defying placement.

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Solstice

Just coming down from an intense jag of work which was happily punctuated Saturday night with a nice solstice party here at Rancho Relaxo. As mayor of Rowanville I am always striving to offer my guests a totally pleasurable visit to the country (seriously). Luckily the weather was fine and we all sat outside around the bonds of fire. Mark launched a few bottle rockets, freaking out Eddy and the dog, but delighting everyone else.

It feels like we have successfully coaxed summer into gracing us once again. Maybe it does work–to invite your friends over–to call summer on all together, let it be known that it is missed, like a cherished friend. It felt good to do what our ancestors did and to really feel the desire for the sun. And the sun arrived like a neat package, up at 4 and no questions asked the next morning. I feel like an ad for the power of prayer.

It's no wonder I feel so darn happy.


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Eddy in the Morning

This morning when I went in to say good morning to Eddy he was bright and eager to ask me if he had been having some sort of memory lapse. He was very animated and spoke with purpose. He could not quite find the words to describe what he was feeling and instead he rubbed at his head in a swirling motion, demonstrating the confusion. Trying to piece it together I give no answers, he is feeling grateful for who he is and the opportunities available to him because of his skills and abilities as a dress designer, a pattern maker. He could get a job in the needle trade he said, fixing sewing machines, because he has to have a job anything to provide for his family. He looks out the window and sees the old family farm in Guelph-he is reminded there is a living to be made on the farm as well.

After awhile I remind him that he has some short term memory loss which he seems to accept but does not dwell on. He points out that he knows me and my name and he knows the dog. All in all he says he's in pretty good shape and position, he looks out the window again and says I have a car down there, I can get around. (Note here; the car is mine, Eddy has not driven in 5 yrs).

I am fascinated by his lucid moments.

A Life on the Water

We are trying to include Eddy more in our outings. We took him up to Baker several times this winter and even although he never left the comfort of the lodge and his wheelchair he was excited about his experiences. Imagining he had been skiing.

On Monday we went for a drive out to WWU's Lakewood Facility at Lake Whatcom, where for $35 (I would have happily paid $350) we got a family membership. I checked to see if they had handicapped access which they did and immediately my head was filled with visions of sunny afternoons spent at the lake shore with the 4 of us. Eddy could sit happily for hours and watch the comings and goings of people in boats.

Yesterday morning when Mark woke Eddy up he could see he had something on his mind and asked him about it. Eddy said he was considering his future in the Navy. Mark reminded him they probably weren't taking any 80 yr old conscripts. I think the lake will be good for his soul.

Eddy's World

If Eddy lived in a care facility there would be no napping outdoors in the country while lawnmowers whirred nearby and little girls ran screaming through sprinklers.

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Friday Finally

Up at Mark's this friday. Hunkering down on the hi-speed, several jobs to finish up today. Eddy is off at day camp. He goes out on Fridays from 9 to 3 or so. I got him up at 8 and gave him his juice and instant coffee, cooled with an ice-cube. He asked me, as he often does, where we were. I told him he was safe at home in his bed, in a condo, in Abbotsford Canada, with me and Mark. I said we are neither in Paris nor on a boat. He seemed happy to hear this but I could tell he wasn't totally comfortable with the answer. I went out and came back a few minutes later and he asked if he had been having mental problems. I said, not mental problems but memory problems. I said dementia. Not sure I have told him so directly that he suffers from dementia. At breakfast he told us that he felt lost. Of course this idea hits you in the gut hard because it has to be so scary to feel lost in your own life. Mark cheerfully interjected that Marcel Gagnon had called and Eddy immediately responded how nice it was that Marcel Gagnon, his once salesman at Paulie in Montreal—still thought of him. And then we all felt happy again.

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Why we live this way

This is Eddy, he is my 80yr old father in law. 30 yrs ago he left Canada for the South Seas. My husband (then boyfriend) rescued him from paradise about 4 years ago and brought him back home where we could take care of him as a family. He is a lucky man all things considered. So when we got married it just made sense that my husband and his father would set up shop in Canada (health care) as they are both Canadian citizens and I would stay put in the states because of my commitments here. School age child, custody agreement, etc... Our houses are 13 miles apart, across an international border.

And so it goes, a few days in Canada, a few days in the States. As we agreed when we got married, neither persons sovereignty would be affected by the union, we are like independent, extremely congenial neighbor nations.