On Line Condolences

"I will always remember the time I spent with Cynthia designing my landscape at the entrance to my contemporary home in Carlisle.  Cynthia brought both wonderful creative design and great humor to the project.

I have fond memories of the time we spent together.  We shared a few glasses of wine while reviewing mechanical drawings and walking my property.  As we walked, Cynthia advised me on how to best grow and place flowering shrubs and trees that fit into the natural landscape.   Cynthia taught me to "create focal points" in the landscape.  I can hear her explaining this to me today!

The spiral staircase leading to my side door was also inspired by Cynthia. We toasted this design the day she presented the staircase illustration.

I send my heartfelt sympathy to Cynthia's family.  She will live on in our hearts and minds forever."  

Susan Lowell - Carlisle, MA

May 23, 2011

"I would like to offer my condolensces and deepest sympathy for your loss."
Robert Perkins Jr -Pittsfield (Westford, Ma), NH -- USA
May 22, 2011| 

Dear Mom,

This has been the longest I have ever gone in my life without seeing you or speaking with you. It is still hard to believe that you are gone. It has been strange without your presence or hearing your voice or getting a hug or a pick-me-up pearl of encouragement from you, but I am lucky in that I did get to have you in my life for so long. And you were so so sick, and so miserable, I am relieved to know you are no longer suffering with that awful disease anymore. That was no way to live, and you knew it, deep down.

So I'm pretty much okay, and Dad seems to be doing better, too. Though he has taken your death the hardest, I believe. He was so miserable, as you probably know, but he has been having private and group bereavement counseling, which seems to ease some of his sadness. He has been attending church and free  CHF information classes at the hospital. He's trying his best to eat well and exercise. And he spends a lot of time reading books and on the internet. And he's joined eHarmony. I know, you don't know what that is, but it's an internet dating site. He answered a whole bunch of questions about himself and they find matches for him. He gets updates everyday with more prospective connections. He seems to really enjoy that.

Today, he is meeting one of the women he's met on an earlier "senior dating" website (that's he's since unjoined). She lives only a couple of towns over and owns a B&B, and after many emails over the last few months, he's gone over to her B&B today to meet in person. She's going to make him scones and coffee. Though the whole thing is a little weird for me, I do so want him to be happy again. You know as much as I that he needs a woman to share his life with. I don't think today's woman will be her, but at least he'll be distracted from losing you today. And hopefully he'll make a new friend, anyway.

So, as I promised you that last day I saw you alive, when I kissed you goodbye as you were laying in your death bed at the Hospice House, knowing I might not see you alive again (though you were barely coherent at that point), I have been trying my best to keep an eye on Dad, as well as my siblings. Though, I have to admit, I've been so preoccupied with Dad and my own life, that I'm not as good about my siblings. As you know, we did all meet for your committal ceremony on September 24th. Everybody seemed to be handling themselves quite well, actually. We did our best to make you proud, and I'm sure you were.

Since that day, there has been a feeling of closure. You are know "home" again, with your mother and your father by your side. And we here still alive are carrying on, just as you would expect, I believe. I think of you often. Sometimes I remember that last few dark weeks, and that brings on the tears. But then other times, I'll remember us driving over to New Hampshire to go shopping, and how you talked about how much you loved the mountains. Or I'll hear a snippet of your voice, singing or reciting a poem. Or your laughter.

We've tried our best to keep your gardens up. Hasn't been easy. I've tried my best to keep your house up. We got the porches re-stained finally, and next summer the house will be painted. I've been driving your truck around a little, mostly just small trips to the dump and local shopping. I visit Dad almost daily.

We miss you Mom. I miss you.
Love,
Me

Prose From September 30, 2007

Sick World

Almost every day, my mother says to me -
The state of this world has made her feel sick.

The grief is in her stomach and her heart.

This woman who was raised in The Great Depression, saving,
scrimping, making fun out of the smallest things, like music and books and drawing.

This woman who loved to study in school, learned to play the piano and read music, majored in  Latin and Greek at Boston University.

This woman who married a handsome and dynamic young minister when she was only twenty-two, and bore two bright-eyed children before she left him after seven years - to protect herself and her children.

This woman who got her own job as an editor, as the late fifties ended, and civil rights became front page news.  A woman who lived through the horrors of the murder of Emmet Till, the assinations of the Rev. Marten Luther King Jr., Robert Kennedy and JFK.

This woman who loved to sing in choral groups, joined the Arlington Street Church, met my father and married him in 1962, worked for with ERA and senior citizens - became a mother again, two more times, then went abroad with her four children and husband to live in the gentle embrace of The Netherlands for two years.

This woman who came back to America with a new perspective, earth mama, grinding up the soil to  grow food, canning and perserving, learning to love horticulture enough to study at Radcliff College, emerging with a certificate in Landscape Design.

Years of volunteer work, without missing a hot meal every single night for her family. Recycling before it was hip, cautious of waste, because she was a "child of the Depression."

This woman, who has now lived beautifully and with goodness for seventy five years, has pain in her heart for the children of Bagdad, the families with no water, no food, no money, no future.  She is sickend by the US President.

Almost every day, my mother says to me -
The state of this world has made her feel sick.

September 28, 2007

Prose From March 26, 2011

There is a small window of opportunity
in this early, frozen spring in Maine,
where I can walk on top of the layers of winter snow -
no snow shoes required,
just the crunch, crunch from my old boots.

The trail from my house through the woods,
along a well worn path by summers end -
to the home of my aging parents.

It won't be longer than a week
before the snow
begins to sink
beneath my wrangled weight -
and I will be forced to decide
between the path or the mud in the road.

Home At Last

Mom died peacefully at five-twenty this morning at the Hospice House with Dad by her side.

One Week

Today makes one week that Mom has been in the Hospice House. It's also her birthday today. Seventy nine.

Dad and I met with Minister B. at the church and were kindly driven up to the House to visit with Mom. We arrived a little after noon. She was sleeping. We greeted her, she seemed to slightly acknowledge our presence.. a little bit of (closed eye) movement, her mouth moved a little, sometimes her brow furrowed. I kissed her and spoke with her, told her we were there.

I had grabbed a hymn book off of her piano before we left, and Dad sang a few hymns to her, Minister B. singing along, too. We spoke to her. I read a little bit from another book I brought up.

The nurse and CNA on duty, new to us, checked in with her and us several times. We spoke with the doctor, too. He admits he doesn't know why Mom is so unresponsive, except that I suspect he's gently trying to tell us what we already know. They are doing their best to keep her as comfortable as possible.

Just before we left, around two, the CNA and nurse shifted her in the bed. She grimaced while they did it, maybe even moaned a little bit. Before we left, we told her goodbye, we kissed her. Driving home, I realized I forgot to wish her a happy birthday, but in retrospect, it didn't feel very appropriate anyway.

We have decided to stay home today, to take care of some business. This still could change.. we feel like we are on call. I have an appointment tomorrow at eleven-thirty, and I'm trying to decide to keep it or not.

My cousin from Maine called me last night, offering any help needed, as well as condolences.

I read back some of the earlier posts of this blog late last night. It has given me more perspective. It feels like it's been a long goodbye, but it still doesn't make it any easier.

Me and Mom in 1966

Waiting Again

It was an emotional weekend with my siblings and nephew and in laws visiting Mom at the Hospice House. They were very shook up seeing Mom so unresponsive and frail.

Dad and I stayed home on Sunday (well, he went to church, and I took the day off from my gig), and I did a lot of weeping off and on all day. Dad and I shared a meal alone on Sunday night.

The doctor told us on Saturday that it appeared to him that Mom may die within the next few weeks. She has been taken off of Haldol all together. Mom has eaten very little, mostly on a liquid diet. She hasn't been eliminating.

I am not a care giver anymore. Just a close family member at the mercy of this passing of time.

Dad and I are going up shortly. We are meeting the minister from his church, who has offered to drive us to the House from there and back.

I am behind on my bills and my banking and my laundry and my kitchen is cleaned out of food. Tough time, this waiting.

Present

I left my home a little after ten in the morning yesterday and arrived at the Hospice House at eleven-thirty. Mom was in the same position as I saw her yesterday. I greeted her but she did not respond or acknowledge my presence, or maybe she did but it was very subtle. I settled in my stuff and picked up the book of short stories by D.H. Lawrence and began to read the story "England, Oh England."

And naturally, I began to cry. Damn it, I said softly but aloud, not hiding it from Mom. She did not respond.

After a few more false starts and wiping of tears, I got into a flow with the reading -  trying to follow the story more then to see myself alone in a room reading to my dying Mother. The CNA popped in and waved me on. Then the nurse who has been with her for a while came in, and we chatted. She said Mom ate a little ice cream yesterday, but mostly she's only drinking fluids. I didn't see her eat or drink or urinate or open her eyes the three hours I was there.

I read some more. Then the social worker Dad and I had met with the day before, Jamie, came in and asked if I'd like to talk with her. We went into the very zen -like reflection room and talked more about the decisions made in the last twenty-four hours - Dad decided it would be best to arrange for a nursing home, and made some calls to a very reputable one only half an hour from our house. I told Jamie I stood behind anything he needed, at this point, and I'm positive my siblings would as well.

Sadly, or maybe, not sadly, the bottom line is that it appears that Mother is shutting down and there is a strong possibility she will not leave the Hospice House. The moment I walked into the facility I realized that, and I told Jamie I would not feel remorse if that will be the case. In the meantime, Dad has gotten enough straightened out for the temporary future enough so that now, Jamie urged, it is time for all of us, but especially Dad, to simply just to be in the present regarding Mom. She wondered if I could tell him that, and I said yes. I did later when I got home. He gets it.

I went back to the room and read some more. On the way back, I waved to Doctor A., who was consulting with people in the main office area. I was told Dad was on the phone, so she told me to let it ring when I got into Mom's room, and then I could talk to Dad. I said to Mom, who was in the same position as before, "Dad's on the phone, here he is," and I put the phone up to her ear and I could just barely hear Dad say, "Hi sweetheart," and that was the only time I saw Mom respond at all. Her eyes fluttered and she just barely whispered "hi."

It was a touching moment to see. I let her listen to him talk some more, then he and I talked for another minute and hung up. I went back to reading the story, when Doctor A. walked in. He asked if Dad was with me, I said no.

He told me she had had a tiny bit of morphine the night before. He doesn't think it's the morphine or the Haldol that is making her like this. He said we was going to skip the next dose of Haldol to see if her agitation returns. Then he said, "I'm sorry." Twice.

I shrugged. He left, I went back to reading. The CNA came in and asked if I was staying all night, I said no, but we were coming back tomorrow. She said take your time, I'm gong to give her a sponge bath after you leave.  Okay.

I finished reading the story. I said goodbye to Mom, talked to her like she could hear me, told her who was coming to see her this weekend. I told her to hang on until then. I love you, and I know you love me. Then I just stood there and looked at her from the foot of her bed. She did look comfortable, and this brings me peace for her. She's been agitated for so long.

Last night, Dad called to tell me that he had called and had a good talk with the nurse there. They've decided to gradually take her off of the Haldol all together, down to .5 mg today, and no Haldol at all on Sunday. That way, he says, we'll know, if it's the drugs or...  nature taking it's course.

At nine-thirty at night, my sister, older brother, and nephew came over for an hour visit. We sat outside by the campfire and talked. I was feeling strong and have been concerned about their feelings. I've had a lot of time to spend with Mom and grieve, but they haven't. It's a crappy feeling to try and squeeze it all in in a short amount of time and with so much distance between them, I can imagine. I should not have been surprised when my brother suddenly broke down in a ravaged fit of tears. My sister and I told him it was okay to cry.

Dad and Don and I will get rolling in about an hour, and the other three will follow up later. The social worker will be available for the others if they should like to talk at all.

My girlfriend Lynn, who lost her mother in early February to this disease, said to me in an email yesterday, after I had filled her in on the where we were at,

"I think I would weigh on the side of caution and plan to spend as much time as possible with her now - I don't know of anyone that has come home from hospice - but what do I know." 

Visit With Mom Today

Dad and I left at ten in the morning, arriving at the Hospice House at eleven-thirty. Mom was in bed, resting comfortably, with a little smile on her face. She did acknowledge our presence to a point. We were informed that she had complained of pain earlier that morning, so she had been given a small dose of morphine. I had brought a framed photo from their house that had been taken about ten years ago. It's a line up of her and Dad, with us four "kids." She mostly kept her eyes shut, but I think she saw it. I put in on the table by her bedside.

About twenty minutes after we arrived, she somehow communicated to me that she needed to pee. I flagged down the on-call CNA, and together, with much effort, we got her out of the bed. We quickly realized she was too weak and unable to walk, so the CNA brought the portable commode over and placed it right next to the bed. We plopped her down on that, and after a while, she finally peed. We got her back in bed and propped her back up again.

A little after twelve noon, the Hospice House social worker, Jamie, knocked on the door. We three left Mom's room (she was snoozing anyway) and went to another room for a meeting that lasted nearly one hour. We mostly talked about getting Dad signed up with Maine Care, which would help him pay for more help once Mom got back home. Maine Care would pay for up to thirty-two hours a week for extra help. We mostly would need evening help, which makes it a little harder, as we live in such a remote area. Also, the home health workers (which would be separate from our Hospice agency), are not allowed to administer medications. If Mom was to wake up in the middle of the night, Dad would have to be awoken in order to administer the medication.

After our meeting with the social worker, we went back to see Mom. It was a little after one.

By this time, we had run into our friend, Debra, who also happens to be a nurse on our Hospice team. She had had a monthly meeting there at the facility earlier in the day and stuck around in order to spend some time with us. On her free time.

As we hovered around Mom in her bed, the afternoon nurse was in and out, filling us in on some of the last few hours with Mom as well as questioning us more about Mom and her life. As Dad, Debra and I were happily opining on Mom and her many life achievements and accolades (cutting each other off with each new memory of wonderfulness), the team chaplain, Lissa, swung by and joined the crowd. Mom continued to lay there, half doped-up, half ravaged by her disease, her eyes closed but dancing in her sockets, grabbing at as many of the words and trails as she could.

One by one, the crowd gracefully thinned, and again, it was just me and Dad left in the room with Mom. When Mom called for me and expressed she needed to pee, I paged a nurse. We began to move Mom in order to rise her towards the portable commode, but she began to moan in pain, so we let her rest some more. More time went by, then she expressed she really needed to pee. I paged for help again.

A different woman came this time, and we realized we needed the bed pan. With more effort, the nurse and I rolled and shifted Mom onto the bed pan. But she couldn't pee. We tried different methods, we waited, but nothing happened. I asked this nurse if this was common, and she said yes, that sometimes it's hard to get used to. With no luck, we got her comfortable again, and she dozed off, sort of. Then it was time for Dad and me to go. She did not make much of a fuss when we said goodbye. I had told her earlier we would be back on Saturday, with the siblings and a small birthday celebration.

On our way out, we ran into the doctor. He stopped us and told us that Mom has had two calm nights of sleep. She only made a fuss the first afternoon after we left, which was quickly resolved, and then this morning, when she complained of pain. That's when they gave her the small dose of Morphine. She's only been on the 1 mg. of the anti-psychotic drug, Haldol. He said she is not eating much. I said you have to coax her to eat. He stressed that they were.

Then he summed it up. He said "it doesn't look good."

He thought maybe Mom was hovering around stage 6c or 6d of the disease.

I called my sister and sister in law when I got home. My sister, older brother and nephew will come up tomorrow night, and we will go visit Mom on Saturday. My younger brother and sister in law will come up Saturday night, and go visit Mom alone on Sunday. I might go up tomorrow alone, because I wonder how much time is left. And maybe I could read to her a little bit more.

Brief Phone Call

Called the facility and spoke with Mom for about one minute at five tonight. She sounded a bit whipped and weak, but she knew who I was, and I was able to tell her I was thinking of her and I loved her. Dad has changed his mind and he and I will head up tomorrow morning to visit, and so I was also able to tell her that as well. While we are there, we may also have a chance to meet with a social worker, the chaplain and perhaps the doctor.

Then the plan is to visit again at least by Saturday, with the rest of the siblings, in laws, and my nephew. They were all planning on coming up for the weekend anyway to celebrate her birthday (May 10, age 79) and Mother's Day. We'll play it real cool and try and visit with her in shifts.

I am hoping to get up there about every other day, at least for the first week or so.

A Bit Lost

Today I woke up early after retiring early (with a throbbing headache from crying), and got dressed and tried to decide if I would drive up to the Hospice House or not. I did have some errands to run in town, so before I left, I stopped over to consult with Dad, and he had already decided to stay home today, and due to appointments, he will stay home tomorrow, too. He had called the facility at eight in the morning, but Mom was still sleeping, but the staff was reassuring and promised to let Mom know he had called and that he loves her.

It was then that I decided I was too emotionally drained to be of much use, and because it is a long drive, and I'll need to spread my visits out, I, too, will stay home today. Dad did just check in with me to let me know he did speak briefly with Mom, and she sounded okay. She was very sleepy, but she did hear his voice. Then the staff told Dad that she did complain of neck pain and pain in her sides last night. They also reported that they gave her a bath this morning and washed her hair.

I continue to feel weepy and sad, yet I also admit there is a sense that it is out of my hands, at this point, but the hands she are in now are better than what Dad and I could be providing, we both admit. I just can't help feeling worried that she may feel abandoned by us.. but I hope to remedy that by calling her in a couple of hours, and hopefully, I'll be able to speak with her for a minute. And perhaps it's worse for me than it is for her right now.

Dad and I both feel a bit lost at the moment. When I went next door earlier, I was okay until I saw the living room and all of the residuals from our recent "battles;" the pillows strewn about, the blankets a tossed every which way atop the couches, the footstools askew. The books and magazines piled around, half-read in desperate ploys to appease and distract her from her woe and angst. The vase of wilted daffodils Chris brought on Sunday. Seeing it all, and hearing how quite their house was, brought a fresh swell of tears. The indent in the cushions of the couch, nearly still warm from the many hours her body has lain there. It was a bit much for me, and I decided it was best to leave and tidy it up on another day.

So, I am home now and mucking about best I can, like a child reaching around in the dark with out the routine of keeping eyes and ears out for Mom. For now, she is safe and cared for, and Dad and I have the room to breath a little and work on some of our own problems.

But the thought of Mom is always there. It is still too early to speculate, but we will continue to hope that the plan carries through and the team at the House can stabilize Mom so that caring for her again, back home, will be a little bit less overwhelming. We will just have to wait and see.

Home

Here it is Tuesday night. The weekend brought deeper decline with Mom's inability to deal with the symptoms of the disease, and even with the extra help from my sister and our friend Chris, today we came to the point of going with the suggestion from our primary nurse Corrin to admit Mom into the hospice house provided by the agency. The main reason was for more acute regulation and stabilization of Mom's medications in order to moderate the erratic and exhausting behaviors culminating from the disease, and the secondary reason was to provide much needed respite for Dad, and me.

While I struggle with deep feelings of guilt and sadness and grief, I believe that, at this point, it was an action-based decision that needed to be stood behind in this stage of the journey. Our Hospice agency provides this amazing facility, and many of the patients admitted, we found out today, are on a similar path. People are admitted from home, after care givers have given all their all and become depleted. Thankfully, guidance has been given from this thoughtful team and we have followed, because we have gotten very close to the end of our coping rope.

This is all coming straight from my heart - I don't edit these posts (except for spelling and accuracy, and even there, I miss a lot, too), and though Dad and I work close together and share a lot of opinions in this journey, these posts are from my perspective. I am feeling emotional tonight, the echoes of Mom's plaintive wails still fresh in my head. I knew this would not be easy, but to really live through it is much more agonizing than I could have ever predicted.

However, this is about Mom, and right now, I know she is in good hands.

She will be there from one to three weeks, as the doctor evaluates and readjusts her medications. Mom was very cool and calm, considering, all day, right through the ambulance ride, the check in, the waiting in her new room, and even through the nearly two hour consultation with Dr. A. Normally, she would have been tweaking out as we talked about her in her ear shot, but today, she rested and snoozed in the comfy recliner in her room as we three discussed all kinds of things in her presence.

May 3, 2011

Dr. A. has decided to take her off the two "Alzheimer's drugs," Aricept and Namenda, as well as her high blood pressure/hyper tension drug. He will, first, increase the Haloperidol up to three mgs. a day. It is in line with simply treating the symptoms, not trying to "cure" the disease, I think (in a simple way of explaining, not that I really understand.) If there is no hopeful results from that, he may try giving her the old stand by anti-depressant drug Thorazine (too tired to check spelling.)

The team will try to regulate her so that she can become more manageable at home, keeping in mind that a residential facility in the near future may not be such a horrible evil thing, based on the difficulty of the disease, but by no means was he telling us what to do either way. Only that we also have to keep in mind the financial side of the puzzle. We have to try and get out of this Medicade (or is it Medicare? I always get them mixed up) as much as we can. All of this is covered, but our window of opportunity is limited. Gulp.

Mom was calm until our meeting with the doctor ended, and it was time for us to go and get our respite. That was when Mom "came to" and all of my old instincts kicked in to ease her..... however, the nurses and aides there where so great, and the best thing for everyone, especially Mom, was for us to leave her. But shit, that was hard.

I cried most of the way home, sort of like the day we drove home from the vet after putting Bunky (the cat) down, because that was the best thing to do for him. This mixed feeling of relief and guilt and sadness. I came home and had a glass of wine, gathered wood and made a small campfire outside, talked to Dad two or three times on the phone (he had called the HH and they reported that she was calm again), had dinner, cried. The hospice home is an hour and a half away. We can visit or call anytime, day or night.

Tomorrow we will decide if it is best for her mental state to go for a visit or stay home. Because, after all, all she wants to do is GO HOME.

Dreams And Reality

Wednesday night Mom's disease took a strong hold on her and she was a "terror" all night. Dad had to give her a "calming pill" (Ativan) at quarter to seven. Then she had her usual Ativan with her bedtime pills at bedtime at eight. She was sleeping when Dad retired at nine forty-five, then she began to stir and moan, so he gave her a .5 mg. Haloperidol. About an hour and a half later, she was agitated again, so he gave her a third Ativan. Finally she settled into sleep.

Which made for a very groggy, sleepy lady all day yesterday. By the time I arrived, she had risen, taken her pills with some juice, had a small b.m., and was working on a banana. She ate two pieces of the hard boiled egg Dad had prepared for her, then it was to the couch for a long morning slumber.

When the HH aid, Michelle, came around eleven, Mom pulled out of her groggy sleep enough for a little sponge bath and cleaning up, and she even spoke pleasantly with the aide and smiled a little, too. Then, it was back to the couch. At lunch time, Dad snapped her out of her sleep for a second with a slice of bacon.

Later, she began to stir, and I was able to get her up a couple of times for some wobbly walks around. When Nurse Corrin arrived at about three-fifteen, Mom stayed fairly alert for a while in the chair, answering questions and listening to us discuss the last twenty-four hours. She had eaten a couple of crackers with peanut butter and a scone and a couple of glasses of Ensure just before Nurse C. arrived.

At one point, Mom broke into our discussion and wanted to share a dream she remembered from the bad night before. Corrin encouraged her to tell us about it, and asked if there was anyone she knew who appeared in the dream. Mom described something like this: that a whole bunch of people came to the house, mostly strangers, or "types," and Mom was stressed because she was supposed to run a lecture or a panel of sorts. When asked, there was only one person she recognized in the dream, and that was the minister who's memorial service Dad had attended last Saturday. Mom had known him, too. Corrin asked what Dad could do to make her feel better when she awoke from a scary dream like that. Mom's reply? "He could help me line up the chairs."

Dad realized that he should try harder to make Mom feel more secure if she wakes up from a scary or stressful dream like that.

We've been encouraged to continue keeping notes and writing down anything significant (or not) so that perhaps we can find patterns that trigger the agitation days and nights. I left a little after four in the afternoon, with Mom calm, and told Dad to promise to call later in the evening if Mom was too much and I would come over and stay the night. But he never called, and this morning he sent out the email report that she slept like "a baby" all through the night.

Today, some of her gal pals are visiting at ten, and Dad is leaving at ten fifteen for a day down in the city. I'm heading over soon. At least the sun is shining, and it's Friday, and tomorrow we have extra help with the arrival of my sister for an over night visit.

April 29, 2011

Poor Mom. It's amazing to see how she snaps in and out of her "real" self and the personality created by her damaged brain.

Crazy Day

It's late, I should be going to bed.

She was so agitated, all day, and into the night, too, according to an email I just received from Dad.

I nearly lost my mind with impatience today, and poor Dad did, too. This job as caregiver is so damn frustrating and hard sometimes. I, at least, have relief, I can walk away at some point, come home, try to forget. Dad can not. It's exhausting.

The Calm And Winding Road

Well, as of right now, Mom has been calm all day. The last three nights, there has not been any dramatic over night episodes.. it appears that she is very comfortable with the hospital bed with the special gel mattress. She has been sleeping a lot during the days, too.

Dad and I both got some respite with the arrival of my brother and my S.I.L. on Saturday at noon. He was able to attend a memorial service in the afternoon, and I was able to take my weekly walk with my neighbor as well as have extra time to prepare for my gig that night. They left Sunday morning, and I stayed with Mom until Dad got home from church, around one forty-five, and then I went home for a couple of hours.

A little after four, my S.O. and I walked over with a basket of dinner fixings, and by five we four were seated at the festively decorated dinning room table and indulged in an Easter Sunday dinner of lamb, mashed potatoes and asparagus, with a little salad. Mom ate fairly well, really enjoyed the lamb (always has been one of her favorites), then began to get antsy as we finished our plates. We managed to convince her to stay with the mention of dessert (a simple lemon cake with fresh strawberries slices), which I quickly served to her and kept her at the table for another five minutes or so. After that, I settled her back onto the couch, and, with Dad dozing off in the chair and the television quietly on, I cleaned up the dishes and the kitchen and left by six.

This morning Nurse Corrin arrived at nine, and she examined Mom right in the bed. Though her vitals were all good, Dad expressed concern about how much Mom is sleeping, and Corrin reminded us that this is part of the progression of the disease. She explained that right now, she is sleeping a lot, only perking up a little at some parts of the day (the afternoons, in our case), but that she may snap out of this phase and begin to be awake more again, too. Of course, there is no telling how things will shift, but I mentioned to Dad later that at least it's not as exhausting on us at the moment. It is much easier with her sleeping a lot, and if it doesn't effect her night time sleeping, which it hasn't in the last three nights, let's not stress about it.

I left today at around two in the afternoon, after having sat with Mom while Dad did some errands down town. In that time, I read two more chapters from "Little Women" to her, got her properly dressed, gave her some more Ensure, and did a load of laundry. When Dad came home, she got up and had a little tiny bit of soup, then it was back to the couch. I cleaned up the dishes and came home.

Just a few minutes ago, Dad called me to say that Mom wanted to go out for a little drive in the car. I just saw them go by.... I had a little flash back to all the times in the past when they were always busy, running off to engagements and parties and dinners and concerts, leaving me free not to worry.

Well, just now, I heard the car beep. They've been "on the road" for about twenty minutes, now they are back home. I guess I'll head back over now and see how bumpy the road towards "crazy hour" is today.

Facing Fears

Yesterday, Mom was very groggy in the morning hours. Dad had had to give her one extra Haldol and later, one extra Ativan, in order to get her to settle in and sleep all night.

A home health worker came at around eleven-thirty and gave Mom a little sponge bath and change. Mom skipped lunch all together, opting for more sleep. I read a lot to her, though I'm not sure how much she really heard.

The hospital bed arrived around twelve-thirty, and the man very quickly and efficiently set it up and showed us how it works. An early email report from Dad today reports that Mom slept fairly well in it last night (Friday night), and he had no need to give her extra medications.

A little after one-thirty, I think it was, the sun was beaming and warm, and I was able to convince Mom to go sit outside on the side porch off their bedroom. Just as we settled down, I saw our next appointment drive up. Lissa is a chaplain who works on the team at the agency, and she joined the three of us outside on the porch for awhile, and explained her part of the network of supporters.

After about twenty minutes, we went back inside and Lissa sat close with Mom and asked her if she was afraid of dying. Mom began to cry and said yes, that she didn't want to not go on living. It was heartbreaking to see Mom express herself so, but it was really good that Lissa broke the ice a little. She got Mom to "face" the fear and Mom yelled out the big scary word DEATH. Then she became very upset and asked to be helped to stand up. Dad got her up and walked around with her, giving Lissa a chance to ask me about a few things. Then she mentioned that if I got a chance, to ask Mom if she was afraid of dying or afraid of being dead. I said I suspected it was the former, but I said I would ask her if the opportunity came up.

Lissa left, leaving us her phone number so that we could call her any time to make an appointment to talk, and promised to call next week to check in, either way. Then Dad went down town, and Mom was calm again on the couch. I continued to read aloud from Little Women (it's one long book.) When Dad came back, it was my turn to go down town. Back home, I went back over to Mom and Dad's at five.

I had purchased an Easter Lilly and brought it over, and Mom enjoyed that. Dad had to run back down town to get some pills (they weren't ready earlier), and so I stayed with Mom for another thirty-five minutes or so. Mom asked me how I liked "the woman that came earlier today." I said I liked her.. then we were able to talk some more, and I was able to ask Mom the question, and she answered as I thought she might. That allowed me to assure her that, if she should pass away before any of us, we would all be very sad but okay, as she has surely left her mark on all of us, and she would still be alive in our hearts forever. She seemed to hear that, and she did not get upset again.

Well, a little later she did, but that was just the usual old sundowners cropping up.. but I got her up, offered her a glass of wine, and before we knew, she was calm again, in her chair, watching the news and sipping on her wine. I was happy to have Dad come home to that scene.

I left while the getting was good then. Another emotional day to mull over.

Scrambled Emotions

Yesterday was a tough day for all three of us. Mom, she's, I think, pissed that she's dying, or maybe still thinks she can get out of this mess, and all the "extra attention" is getting on her nerves. Dad, struggling himself with this mortality stuff and trying to squeeze the most out of his life, which is really hard to do when you're not getting enough sleep. Me, burning out. All day over there, reading aloud, worrying about her every move, not living my own life, really. In the afternoon, when she starts up, "home, home, home, home..." I lost it, tears streaming down my face, the look of desperation on her face so heartbreaking. I made Dad take her out for a drive around the "block," just to get her out of the house for a few minutes. It seemed to help.

We were expecting the hospital bed yesterday afternoon, and it never came. We had already stored the twin bed upstairs under the eaves, and so by six o'clock, after a phone call or two with the agency, it was clear they were not delivering the bed and so we had to bring the twin mattress, box spring and frames back down the stairs, and make the bed again for Mom. It didn't take too much time or effort, but added up with the whole stress of the day, the situation, it was really aggravating. We should get the bed today.

Mom had a visit from Michelle in the morning, then from our Nurse Corrin at one in the afternoon. We discussed more sleep management action plans, and I think Dad feels even more support in that area. Nurse Corrin stressed how vital it is for Dad to get good sleep, because he is Mom's primary care giver.

This Saturday and Saturday night we should have a bit of respite with my brother and SIL, and Sunday my gig has been cancelled. I'll have my gig on Saturday night.. I think I need to get away for a minute.

Today, we meet with a chaplain provided by the agency.

Email Morning Report From Dad

I got her into bed at 10 of 8pm, kind of early but she was dozing off in front of the TV.  As usual, I had given her her five pills: namenda, aricept, remeron, aspirin, and ativan.  The other ablutions are using the toilet and brushing the teeth (she brushes but not too efficiently; the home health aids, incl. Maria, do this for her).  

At about 10:05pm I heard the moaning or toning.  I had been in bed for about a half hour.   I found her kneeling on the floor beside her bed.   So I lifted her up, got her into bed somehow, covered her, and went back to bed myself.   Would you believe the toning (or moaning) suddenly stopped?  Yes, it did!

But about 20 of 11pm, the musical tone started again.  There she was with the covers off and half out of bed.   So I got her the rest of the way up and walked her slowly to the toilet where with difficulty I got her seated.   She did a little wee-wee, and when I got her up from the toilet she said "pills".  So I asked her, "Do you want a calming pill?"   She said, "Yes", so I gave her a 0.5mg Haldol instead of an Ativan, something recommended by Dr. N.  This means she had 1.5mg of Haldol yesterday.   She is still asleep now and never moaned again after getting the Haldol.

I got up a lilltle before 6am, unable to sleep through no fault of the Mom's.  But that's me.  

Harmonious Long Day

Mom was not perkier yesterday, at least not until later in the afternoon/early evening.. Then, I wouldn't call it "perky!" She rested on the couch all morning as we switched the beds around. It went very well and smooth, and after the guys left, I spent the rest of the day finishing up the details. Mom was cool about the whole thing, and seemed to like the more opened-up feel to their bedroom. Dad has ordered the hospital bed and it will arrive here on Thursday.

We had a visit from a home health aid, Linda, at around twelve-thirty or so. I told her about what had been going on all morning, and that it was best to just let Mom rest. She was fine with that, and she assisted me move a few books upstairs. She suggested that we order a bed side table to go with the hospital bed. She thought Mom looked pretty colorless that day.

After I went home for an hour for some lunch, I went back around two, and sat with Mom while Dad went out for a walk. I read a chapter or two from "Little Women." Once in a while, she still corrects me when I pronounce a word wrong. Despite how she looks like she is fast asleep, I know she is listening.

Later, after Dad came back and they had taken their four-o'clock pills, I had a chance to finish up the details in the basement from the move. I re-arranged some of the things brought down from their bedroom, both in the guest room down there and in the area of the basement where Mom had her drawing table. On her table and in the drawers are dusty pens and unused paper, old landscape plans rolled up and forgotten, photos of dirt, bushes and plots of lands to be landscaped. I just finishing up when I heard Dad and Mom at the top of the stairs. She wanted to come down, but Dad thought she seemed a little frightened at the top of the steps, she hesitated. Left me just enough time to come up with a basket of old photos, and avoid having her go down the steps.

The basket of photos were mostly a huge collection she took during the time the house they live in was being built. From the foundation, to the framing out, to the detailing, to the painting, to the first few days with minimal furniture.. We showed her one or two, she said she didn't remember. I showed her a photo of her on a landscaping job back in 1993. She said she didn't remember. Then she got a little upset, so we stopped.

At one point she became agitated. I settled her into the couch. After two minutes, she became upset again. She didn't know why. I offered to get her up. "yes!" She hummed the word "home" over and over again. I joined her, quietly, as we walked, then at times I harmonized with her. Then she moved her hum to match my note, then we went up another note together. Then back down again. Then I'd harmonize with her again. And then, just like that, she stops and says something "perfectly normal."

Back to the couch again. At five-thirty, I kissed her good night. Dad was starting dinner. I wished them good luck and hoped they would be comfortable in their new sleeping arrangements, all was calm. At home, I started a small campfire, an activity I've found to be very relaxing. Burning wood from the fallen  branches in the woods. Back inside, I was working on some video transfers. Dinner would be ready in ten minutes. The phone rings, it's next door.

Dad hands the phone over to Mom. Mom wants me to come over. Be right there! She was still in bed, Dad trying to console her. She was crying and "toning" and her knees and arms were sticking up. "Do you want to get up? Put on your bathrobe, go in the living room?" "Yes."

April 19, 2011

So, we did that, and she calmed down. And I left about twenty minutes later, Dad cradling Mom on the couch. I could only hope for the best. It was a long, tiring day, and I was in bed earlier than usual.

It's raining today, and it's bath day.

Changes

Today, my friend and fellow musician Stephen is driving down to assist Don, Dad and I in the bed switch. We've decided, in order to get a hospital bed (provided by the hospice agency), we first need to move the two twins beds from an upstairs guest bedroom down and the queen sized master bed up in their place. With this, we hope to provide more comfort for Mom and Dad.

This will require a big change over in the way things have been.

The last three days, Mom has been very subdued. The usual afternoon "sundowning" has even seemed less brutal. Sunday afternoon, I felt comfortable leaving Mom in the loving care of Chris, who made a quiche for their supper while she was there. Chris also has an interesting theory about why Mom makes these odd humming noises, especially if we have to get her up and walk her to the bathroom. She thought it might be something called "toning" which is something she had done to help alleviate labour pains just before she gave birth. I say that that makes perfect sense. The humming, which sometimes, when I join her, turns into a sort of melody that we improvise as we go along, is a way to cope.

Monday, Mom was very very groggy and sleepy all day. Dad had had to give her a second Ativan over night, to keep her in bed and sleeping. She woke up for a while when the home health aid came to give her a little sprucing up, then back to the couch she went. Dad ran out to do errands, and I began to read from the "Little Women" book, but it wasn't long that I could tell she was really asleep.

Then the phone rang and it was the social worker from the agency, calling to try and get a first meeting in with us. I told her to come on by, and the timing worked out well. Mom stayed in the couch, half awake, half asleep, while the three of us sat at the dining room table and had a very good and eye opening discussion. One of the things I'm glad we decided was to cancel the six month follow-up appointment with the neurologist, Dr. D. I was dreading the thought of dragging Mom into the car and driving an hour there and back, just so that he could talk with her and see how much she has deteriorated. Also, now that we are officially under hospice care, we are no longer trying to "save her" life, so to speak. He may have wanted to prescribe another drug, in his dual interest in learning more about what works for this disease, as well as helping Mom to be more functional.

Just after the social worker left with a promise to come back in about two weeks, our primary hospice nurse, Corrin, showed up. She agreed that canceling the neurologist appointment was the right thing to do, so Dad went down and made the call and that was no problem. Then she checked Mom's vitals, all good, looked at Mom's healing (finally!) ankle bone and her elbow scrape. She wanted to ask Dr. N. of it was okay if Mom started using Robitussin for her extra mucus, which is making her a noisy sleeper and also cough a little bit more, but Mom heard that and flat out refused! It was funny, the old Mom rearing her head. Corrin, being a sweetie, respectfully agreed that she would not bring it up with the doctor after all.

She also spoke with the doctor about any other ideas for helping Mom to sleep through the night. She called back later in the afternoon and Dad was told that if Mom was still restless at bed time, he was allowed to give her one more .5 mg. of the Haloperidol.

Yesterday, Mom did exhibit three of the signs that the hospice agency uses to help determine if a person's body is beginning to die. Lack of appetite and food intake, sleep almost all day, and lack of interest in what is going on, or a withdrawal. Now, some days are more like this than others, and sometimes I do wonder if it especially on the days when she's had a lot of the "mild sedatives." Plus, she's on more Haloperidol, too. Maybe we've just sedated her so much that it looks like she's dying.. I sometimes wonder about that. It takes a lot for a person to die. How much fight Mom has left in her, I can't say. It's all very mysterious, and as the social worker reminded us, each journey is different.

I will be interested to see if Mom is perkier today, and how the night went, too.

Friday

Yesterday, Mom was pretty groggy in the morning. But she ate a decent sized breakfast and lunch. We had a visit from Jackie the home health aid, who gave her a quick sponge bath and pampering. During lunch, we had a delivery of a portable commode, which we have placed over their toilet. She's seemed to learn how to use the handrails, though she's not totally happy about it.

Just as I was about to leave for a break at home at two in the afternoon, I saw their friend Nancy drive up. We had forgotten she had arranged for a short afternoon visit. I had promised Mom that she had the rest of the day free... oops. Nancy stayed for about an hour, and later Dad told me that after a little "chatting" with Nancy, Mom got tired and began to moan, so Nancy left.

Mom's sundowners wasn't too too bad while I was there, until about four-thirty. Dad emailed me this morning and reported that she slept fairly well last night, after one false start at bed time. He found the remains of a pill in a little drinking glass this morning, assuming it might have been part of a Haldol.

The extra Haldol dosage seems to be keeping her a little less confused.. She seems to have a sense about what is going on, to an extent. She's heard the word "hospice" enough times. She's been very dependent on me lately.

Dad is being very patient and gentle with her. Tomorrow he has church then a concert from two until a little after three. Chris has volunteered to come at noon and stay with Mom until Dad gets home, probably around four. I hope it goes well.. I missed my gig last Sunday, so I hope to get to it this Sunday. However, if need be, I can skip it again.

I'm having trouble getting my worries out of my head at sleep time. Dreams, imagery. Worries and concerns. Mulling over what else I can possibly to do to make this transition more comfortable for Mom and Dad, and prepare for the inevitable. Not that anybody knows when that is.

Care Plan, Distraction Tips

Our friend and nurse, Deb, who so kindly stayed over on Wednesday night, was still there on Thursday morning until around noon. She switched over to "working nurse" mode and facilitated the initial care plan. She did not get much sleep that night.. Mom was up and down many times.. I believe one of the last things they ended up doing was having a "glass" of wine at two in the morning! Dad slept on the single bed in the basement, though he reported that he didn't get the best night's rest either.

When I arrived late morning, Nurse Deb was just finishing up feeding Mom some apple sauce. I assisted Mom to the toilet where she did a good sized b.m. (with some effort), but I think the stool softener helped.  Then we settled her into the couch while Deb and Dad and I discussed what we'd need and the care plan.

After Deb left around eleven forty-five or so, I stuck around for a couple more hours, helping them with lunch and sitting with Mom. Mom insisted in having wine with her lunch.. At first, we refused, and she began to cry. Then I said to myself, wait a sec? Why not? I got her favorite glass out, added two ice cubes, and poured a quarter cup of the white wine in it. After all the fuss, she didn't really want to drink it anyway. It's just the act of doing it calms her down.

I left for about forty-five minutes around two. When I went back, they were sleeping upright in the little couch together. Dozing like two little kittens. I waited around, but they didn't wake, so I went back home again. At a little after four in the afternoon, they were up. Mom was showing signs of her usual confusion, but I do think the double dose of the Haldol is making it a little more tolerable.

She was laying comfortably on the couch. The phone rings. Dad speaks to the person (it was Nurse Deb this time to let Dad know about a woman who lives in our town who could come for short respites), he hangs up, Mom asks who it was. Dad goes into detail. Mom gets upset, begins crying and moaning. I look at Dad and say "hush," I get her up, walk her around. She forgets about it. I have her help put the dishes away. I've noticed that walking and counting helps. Just counting to any number. Doesn't matter. It's the repetition, something she can grab onto.

She's back on the couch again. The phone rings again. A home health care worker, setting up a visit for today. Again, who is that? Is she coming today? Tomorrow? OH GOD!

But she soon forgets, she calms down. I kiss her goodnight, hope for the best.

Dad calls me at nine last night. He had a good feeling about the night. He thinks she'll sleep all night through, or mostly, anyway. I haven't heard yet how it's going.

It's strange now, I'm in a daze kind of. Just have to keep the action going. Keep moving.

** Just got an email from Dad and he reports that Mom slept solid all night through. He got a good night's rest, too. Not me, though. My mind didn't ever fully shut down much.. oh well.

Bittersweet Acceptance

Yesterday, the evaluating nurse from the long-term hospice section of the agency that has been working with us came at ten-thirty in the morning. Dad and I were able to speak with her for about thirty minutes while Maria kept Mom occupied with her weekly bathing ritual, then Mom came out and the new nurse, Corinne, met Mom and checked her vitals and asked her questions. Eventually, Mom got agitated, so I walked her around a bit, then offered to help her into her bed. After a few minutes, Mom moaned again, so I helped her up and back into the living room. She really hates it when we talk about her, around her, but we had no choice. Corinne kept it short though, and promising to call later, she left within the hour.

I read to Mom for another half an hour or so while Dad ran down to the post office. Then, I split and went down town to the local monthly care-givers support group. Their were only three other participants in this meeting, as well as a different facilitator than the last two times I've been present. There was much discussion about coping, frustrations, support, nursing homes, dying. I found it helpful, only in that the other people there could relate, even the facilitator, who had lost her father the Alzheimer's last year.

I raced home after the meeting, unwound for awhile, then went back next door at five. Dad was leaving at five forty-five for his monthly board meeting at the church, and I was concerned that Mom was taxing him. Well, when I arrived, they were sitting at the dining room table, eating dinner of lobster and shrimp stuffed ravioli. Mom seemed relatively calm to me... Dad informed me that he got the call and that we had been accepted into the hospice service. I believe it was based mostly on the fact that Mom has lost more than ten percent of her body weight within the last six months, plus, well, she has Alzheimer's and they all know it doesn't get better.

Dad was told by Corinne that Doctor N. approved of us doubling the dose of the anti-psychotic drug, Haldol, up to 1 mg. a day from .5 mg. a day. Dad did give her a second dose that afternoon, and she did seem a little less nutty, though still very confused. After he left, I quickly washed up the dishes and Mom settled into the couch for awhile, but she still seemed agitated, so I finished working, turned off the television, and got down to reading aloud to her.

This always seems to soothe her, and soon she was snoring away. After another trip to the bathroom and a little walking about, we settled back into the couch, and I read some more until Debra showed up a little after seven. She had offered to come and stay over night so that Dad could sleep in another bed in the house. A SAINT!

Also, she will be on the team of nurses with our new group of providers. She and our lead nurse, Corinne, discussed the "conflict of interest" (she's a friend of Mom and Dad's), and they agreed that it was okay with them if it was okay with us. Of course, I said, no problem!

We will be offered some equipment, some of the meds will be paid for, and we should receive even more home health help, almost daily, I believe. We were told to buy some stool softener for Mom to assist in her eliminations. I'd like to get a "baby gate" for the basement stairs assembled as soon as possible. Dad told me last night that he took a shower at three in the afternoon, told her where he was, and she was settled on the couch. When he came down, Mom was in their bed, all by herself. Later, he found a blanket down on the bed in the basement, meaning she walked down and up there by herself while he was showering! Can't risk her falling.

So, that's where we stand today. Bittersweet.

Sleepless Nights, Confusing Days

Saturday my sister came up for an overnight, and later my brother stopped by after skiing. My sister went with Mom and Dad to my Aunt's house down the road for dinner. Sis reported back to me later that Mom was very difficult the whole time. Mom's "sundowners" was peaking when my sister arrived at four-thirty, and apparently, it continued on through the whole night. Dad got very little sleep that night as Mom rose from bed several times, wandering around the living room.

Dad got to church and I went next door at about eleven-thirty on Sunday morning to see how it was going. Sis was a bit overwhelmed - Mom was still undressed and sleeping on the couch. We got her up and dressed and fed her an egg and juice and Ensure and a little fruit. Eventually, she ended up back on the couch. Hearing of the bad night before, I decided to stay home from my gig that afternoon so that I could assist Dad, knowing he was exhausted. He was grateful for that. I stayed until about six, then went back over from seven until eight-thirty, after we put her to bed. That night, she stayed in bed and Dad got to catch up on a little sleep.

Monday I went over at one in the afternoon, after I did my down town errands. Mom was okay for a while, dozing in her usual spot, and I read to her from "Little Women" as Dad ran off to do his errands. But then around two in the afternoon, she started up again.. restless, wanting to go home, moving from couch to chair to bed, moaning. She settled down a little when Dad got back around three-thirty, but that didn't last too long, even with a short jaunt outside, up and down the driveway a couple of times. At pill time, she was still agitated, but eventually, she settled back down, and I, somewhat reluctantly, left around four-thirty. I did feel guilty, but I kept my fingers crossed that she wouldn't be too much trouble the rest of the night.

April 11, 2011

April 11, 2011

Naturally, this morning at eight I received an email from Dad saying that she was, once again, up and down all night. He had a tough time getting her to settle into bed.. and once again, lost a lot of sleep.

I'm about to head over there now at eleven and try and keep her up and moving as much as possible so that maybe she'll be more apt to sleep through out the night tonight. I know I'm feeling like pulling my hair out, so I can only imagine how tired and frustrated Dad is.

Hopefully today or tonight we'll get a call from the evaluating nurse for an appointment on Wednesday to see if she'll qualify for long term hospice help. This would, in theory, I hope, provide more assistance. Wednesday night, their friend Debra (the hospice nurse who works for the agency servicing us now) has committed to an overnight (as a friend, "off the clock," God bless her!) so that Dad can get a full night's rest in another bed. We'll see how that works out!

Home

Yesterday I got over early, and once Mom was "up" and dressed, I told Dad to take off for a while and do what he had to do. I read some to Mom, got her up and outside a couple of times, fed her what foods I could get her to eat, and kept encouraging her to drink the high calorie drinks.

April 8, 2011

She has been more confused and whiney than ever. This is especially true by the late afternoon. After Dad got home in the mid afternoon, I ran down town to bank and thought I'd stop on the way back and pick up a shrimp cocktail. I had had some success with her eating appetizers the day before - making a big deal about it with her watered down wine, so I thought she'd enjoy some shrimps. And she did! She ate about six of them, plus a couple of crackers with spreadable cheese.

However, her confusion is devastating. Before "cocktail hour," she and I were sitting in front of the tube, and an ad for chocolate came on. This made her want a square of chocolate, so I got up and brought her one. She took a bite of it and said, "Here," and pointed to the television with the half-eaten piece in her hand. I replied, "You mean me? I had a bite, I'm all set, thanks." And she said, "No, for the girl!" "What girl, Mom?" "The girl in the t.v.!"

Well, I told her we couldn't give it to the girl in the t.v. because, well, she was in the t.v., and then I added, plus, she just ate a square, so she was all set, too. "Oh."

At another point, when she began to get fidgety in her chair, I asked her if she wanted.. oh, I don't, something like, me to turn on the television. "No!" she said, "I've got work to do!"

Sometimes, I'll try and distract her by having her "help" me with small tasks. They say this is helpful, and I do find it works, though the limited use of her arm still makes it frustrating for her.

The worst part is her confusion about "home." This concept of home, what does it mean to her? I still think it's a cry out to "get her out of her own head." Home means being normal again. And it hurts to not be able to get her back to that.

She cries out for Dad a lot, too, even if he's not there. I have to remind her that he's either out or downstairs or taking a walk or on the phone or in the bathroom taking a leak (like he just said to her a minute earlier.)

Our patience is tested constantly. Our hearts are heavy with her agony and our minds our cluttered with all of the things we are encouraged to do for Mom's comfort and health. Their are small moments of lightness, when her confusion does make her say something funny, or when she does have a tiny moment of clarity. She still has razor sharp hearing, and she does respond well to gentle touch. Just holding her hand or caressing her head or neck is soothing to her.

But the painful reality is that it is so frustrating to be unable to take away her confusion, discomfort and fear.

Waiting

I didn't get over there in time to see Maria yesterday, but I could tell she did her usual great care on Mom. When I showed up, Nurse M. was just finishing up with Mom. She began to tell me what she had been speaking about with Dad, which is the possibility of long term hospice care. She wanted to be sure that I understood the criteria, one major one being significant and drastic weight loss, and that the doctor estimates that the person has six months or less to live. There are more, but I'll spare myself writing them down here.

This was being said in front of Mom, who was in her usual position on the couch, listening but unable to really comprehend what we were saying. At last, however, she began to moan (which she has been doing more and more lately.. a moaning whimper), so I helped her up and took her away from the conversation. As we rounded the corner near the front door, she cried out to me, "I don't want to die!" and cried some more. Naturally, that made me tear up, but I told her we were planning for long term help for her care. Which we are.

So, Nurse M. said that it may be as early as next week that we meet a new person (nurse?) to do the "evaluation" for the long term hospice part of the service. She left, and I hung around. Dad went for a walk. Mom was napping. I picked up the handful of brochures on the dining room table that Dad brought from the residential home he visited last week. I read about the services provided from two different hospice agencies. They offer on going care, equipment, counseling before and after death of your loved one. The agency we work with have a home in a city an hour away that we could bring Mom to for a period of time if we needed to.

April 6, 2011

The I picked up a brochure that went more into what to expect when the person is dying. When Dad came home from his walk, I made sure he read that. Reading that reminds us that these very well could be the last few months of Mom's life. She is showing signs of shutting down and preparing to die. I reminded Dad of this, that these could be times to treasure.

Of course, I could be wrong.

We've also discussed the idea of bringing the two twins beds from the upstairs guest room down to their bedroom, and bringing their double bed upstairs. This way, not only would Dad maybe get better rest without Mom's "twitching" in bed, but also it would make it more comfortable if, say, I or somebody else volunteered to sleep in the bedroom for a night, so that Dad could sleep in another room. Mom has been getting up a little more frequently in the middle of the night, sometimes wandering out in to the living room. I'd like to prevent any future falls. At first Dad was against the idea, but now I think he might be warming to it. We can't do it until my brother comes up to help, the large mattress and box spring look pretty heavy.

Mom has been bringing up "wanting to go home" much more frequently. She wants to go home. I'm pretty sure it means she wants to feel normal again. It's so fucking sad.

Another Day With Mom

Yesterday (Tuesday) morning, I went over a little before ten, and Mom was still sleeping in bed. Dad told me that she had awoken a little after midnight the night before, and was twitching a lot and having a hard time falling back asleep. He asked her if she'd like to take some calming pills (Ativan), and she agreed to that. So, he gave her two, and it did the trick. Naturally, it carried over to the morning, and when we roused her from her slumber, she was very groggy, wobbly and dry-mouthed.

I helped her to the toilet and put on her socks, pajama bottoms and a bathrobe, then helped her get to her chair. She drank a whole glass of cranberry juice and took her two pills, nibbled on some banana and sipped on some Ensure. She slowly came out of her fog, and Dad went out to run an important errand, and pick up a few things at the store.

While he was gone, I played manicurist, and trimmed and filed all of her fingernails. She was very good during this, and seemed to enjoy it. I finished it off with some moisturizer, and then I took a damp cloth and wiped the "sleepies" out of her eyes and applied moisturizer to her face. Then I took a damp comb and ran it through her hair, and just for fun, I put a pale yellow bandanna over her head, peasant style. It complimented her lilac bathrobe. We just let her stay in her pajamas and bathrobe all day. Sometimes it's too difficult for Dad to get her sweaters on.

We've noticed that when we give her a Tylenol pill, which is fairly large, she often ends up chewing it, which leaves a bitter taste in her mouth. I suggested to Dad that he try and find a liquid version or a children's Tylenol, and he came home with a bottle of adult strength liquid version. We didn't end up using it yesterday, but I'm glad we have it on hand now.

I whipped up a quick lunch of organic black bean soup (canned) and a small grill cheese sandwich and grapes, and when Mom was done, I settled her back in her chair. As I was cleaning up the dishes, Dad and I were talking in the kitchen. I kept checking on Mom while this was going on ("eyes in the back of my head" syndrome), then I'd go back to cleaning. Then I heard her grunt, and I looked out to see her up, but half-fallen on the back of the chair. "Hang on, Mom!" I called to her, and managed to get over there and support her before she fell completely. Oy, scary. She said she was okay. She said she had wanted to come into the kitchen to hear what we were talking about (a wee bit paranoid). We fussed over her, then helped her over to the couch and settled her in.

I left for an hour, then went back for the rest of the afternoon, until about five. Towards the later afternoon, her confusion set in, so we kept allowing her to get up, move around a little, sit or lie in a new place, until it wore off again (after her four o'clock Haldol pill), and she settled back down on the couch during the Oprah show.

Today, the great Maria is bathing her and giving her extra loving attention. At least the sun is shining, unlike the last two days of overcast and rain, although it's still too windy and cold to take her out for a walk. I think the next two days are going to be warmer.. Maybe we'll take her out for a little drive later.

Sunday Afternoon In Early April

Another short post. Mom has been sleeping a lot, eating little, but still drinking fluids, walking a little, and in the afternoons, mostly, still has her wit.

Thursday a friend of theirs from the church, who just also happens to be a professional hospice nurse and works for the very agency that has been giving us interem help, offered to give Dad and me a break and stayed with Mom from ten in the morning until nearly five in the afternoon. Amazing, and she was happy to do it. During that time, I was able to learn more about how hospice (long term) works, and meanwhile, Dad visited a nursing home facility in the town where their doctor and their church is, and learned more about that. He stressed that they did not pressure him to admit her, in fact, they gave him a lot of information on in-home, long term hospice care, too.

This is where we are at right now.. sort of waiting.. and then we need to get an evaluation as well as the okay from the doctor to see if we can qualify for this hospice service. I'd like to keep Mom at home as long as possible, though it's taking a toll on Dad.

Today, another friend, Chris, came at noon. She is a ball of sunshine and good vibes, she brought a meal of rice and chicken, and Mom is in good hands while Dad and I are away.

As crappy as it all is, things could be a lot worse.

Random Observations

The pattern the last few days, from my perspective, seems to be: Mom rises, has her pills and juice and nibbles on some breakfast. Dozes in chair most of the morning. Has lunch. Dozes some more. We try and get her to participate in little activities (a walk, some exercises, yesterday we took her for a little drive in the car), then more dozing, then at four she takes her pill, then she becomes agitated and confused for a while. This is when I usually go home.

March 28, 2011

Dad has been amazing. We still need to work on creative food ideas. Somebody needs to write a recipe book for people who are caregivers of people with A.D. Don't look at me, I have a hard enough time coming up with ideas for my own meals.

When Mom gets agitated (which she was very much yesterday, she was depressed and snappy), I believe it boils down to this: she's pissed that she can't communicate or do anything, and she's pissed that she is suffering from this disease.

And I don't blame her one bit.

Persistence And Patience

To be a successful care giver to a person with Alzheimer's Disease, a huge challenge is learning how to read what the person is trying to communicate to you. For what the person says and what the person means is not always in line with one and other.

As an example, just a little while ago, I was sitting in the chair reading, while Mom was laying on the couch, "watching" a movie on Turner Classic and Dad was outside taking a walk. All was quite, until I heard Mom moan, and begin to struggle to try and get up.

"Do you want to get up now, Mom?" I asked.

"Yes."

She grimaced, then she said, "My arm hurts!"

I told her we'd ask Dad if it was okay to give her a Tylenol for the pain when he came back from his walk (she likes to have his approval for this, and I figure it's okay to wait), and I helped her out of the couch. I asked her where she wanted to go, and she decided on the other couch. We decided to sit up in the other couch, instead of laying down. The movie was still on, I settled back into the chair to continue reading, and I told her to keep watching the movie.

She moaned. I asked her if she wanted to continue watching the movie, and she said that she did, but she wanted to watch the other movie, too. She continued to ramble, words coming out that made no sense, and as she went on, she began to get frustrated, and started to weep a little.

So, this is where I had to ask more questions, to find out what she really wanted. Do you want to watch the movie? ("Yes.") Are you comfortable? ("Yes.") Does your arm still hurt? ("Not too bad.") Then she tried to communicate some more, and again, the words made no sense. This is when I said to her something like, "I understand you're trying to tell me something, and you are having a hard time expressing what you really mean. Try not to get frustrated, Mom, let's work this out together."

Finally, it dawned on me what she wanted me to do.

"Do you want me to read to you some more?"

"Yes! I want you to read to me!"

Persistence and patience paid off. I turned off the television, and picked up where I had left off earlier in the day in the book "Little Women," by Louisa May Alcott.

Other times, short-term memory works in your favor. At lunch today, I prepared them both little sandwiches with little sides of fruit, chips and cherry tomatoes. They sat to eat, I did the dishes, then joined them at the table. Mom ate fairly well, for her, then she began to push her plate away, fussing. I asked her to finish chewing before she rose, but no, she wouldn't have it, and she began to say something like, "Don't be like THEM! Let me go!" Agitation rose again.

So, "No problem, let's get up" and we helped her rise. While she was still gaining her balance, I asked her if she'd like to wash down her mouthful of food with her drink. "Yes." She drank. Still standing, I offered her a grape. She ate it. Then a chip. Then she wanted to sit, only at her chair. I helped her to her chair, then brought the plate of food over. I was able to feed her a few more bites of everything with her sitting in her chair. Persistence and patience paid off again.

I noticed Brian, the physical therapist, used the same techniques with her today during his visit. He worked her through a "vigorous" routine, and at times she'd complain, saying she couldn't do it, wanted to stop. Then he'd persist, "Just one more." "You can do, you're stronger than you think." "Great job!" And she'd finish the exercise. Persistence and patience.

Sometimes, you just have to let the person stumble out the words, even if they make no sense, and try and feel the emotion behind the words. If you have any sense of intuition in you at all, you'll get the notion of what the person is trying to say. It could almost be likened to trying to communicate with a person who speaks another language. You listen to the emotion, you read the facial expressions, the hand gestures, read the tone of voice. You apply that to the situation that you are in at that moment. You search and reach and try to find the true meaning behind the words. This requires persistence and patience.

In the end, though, when you do realize what the person is trying to communicate, there is such a great sense of relief and accomplishment. And nothing feels better than letting the person know that you can understand what the person is trying to tell you. The stress is momentarily relieved, and the person suffering with this horrible disease does not feel so misunderstood. For that one moment, the person can feel normal again. That feeling is such a gift for both of you.

Even Steven

No news is good news, right?

That's how it has felt the last few days. We seem to be at an even keel right now, with the sunnier, warmer days (though a few snow showers here and there), and Mom just kicking along, nibbling on foods here and there, sleeping a lot, and some little walks thrown in for good measure. Looking forward to warmer days so I can get her out for more sunshine and exercise. We had our last visit from the occupational therapist, Gwen, yesterday, and right now, the physical therapist is visiting while I am still at home. I suspect we may see Nurse M. later today, too, but maybe not. I'm heading over there within the hour so that Dad can run down town and get his hair cut and go food shopping. I think my sister is coming up tomorrow for the night and hopefully to stay with Mom on Sunday.

Short Entry

I didn't spend a whole lot of time with Mom over the weekend.

Dad's been writing down journal-esque entries in the spiral bound notebook I brought over... jotting down random things like what has happened over night with sleep (or lack there of for him) and trips to the bathroom, as well as what Mom may or may not have eaten.

From what I can see, Mom is back to a "baseline" of sorts, where she can walk fairly well (though I still tend to aid her, as she can be wobbly), her confusion is lessened, and she eats sporadically. Two things she does do a lot of is drink fluids and sleep. Yesterday, she slept throughout most of the day, while snow fell all afternoon. Finally, I got her up and had her walk around the house a bunch of times.

Yesterday, we had a short visit from a home health aid, Linda, and today we should see Nurse M.

I wasn't feeling well yesterday.

Better Today

Mom was better today.. Turns out, Dad informed me this morning, that she ended up sleeping on one of the couches in the living room all night. She called for him at six-thirty in the morning, and he helped her into their bed then, where she slept some more until about nine-thirty, I think.

When I got there, she was dozing in her chair, having just had her juice, pills, Ensure, and a banana half, and later, I helped her eat an entire hard boiled egg and drink a glass of orange juice. We were expecting visitors today, but everyone showed up later than expected and our nurse M. ended up rescheduling for Monday. I took off the bandage on her ankle with the pressure wound and let it air for a few hours, then when the P.T. Brian arrived, I applied a simple band aid, her socks and sneakers, and we three went outside for three loops up and down the driveway in the windy but warm late winter air. Then we sat her down on one of the chairs on the front porch in the sunshine, and Brian had her do some leg exercises. After a good half an hour in the sunshine, we went back in, and he had Mom show him how she used the bed bar. Then he let her rest, promising to call next week.

After another forty-five minutes -and by this time, Mom and Dad had already eaten their "dinner" lunch of salmon, rice and green beans - the home health aid Linda showed up and gave Mom a light sponge bath, moisturizer and a fresh shirt. It was a short visit as Mom was tired from her "work out," and we let her settle back down, up right, on the couch with her feet up. Dad had retired to the basement for awhile, and I read aloud from the Cuban travels book.

Four o'clock came, and Dad took his pills and we gave Mom her Haloperidol pill. She was less confused today, and even asked us if it was just the one pill she was to swallow. One more bathroom break later, I settled her back up right onto the couch and went home.

On my walk back, I saw my brother's car at the top of our driveway. He's up skiing with friends and is staying over night with us. He zipped over to spend some time with Mom, and I think it's good for everyone to have more visitors, as tired as Dad is these days.

Another Bad Day

So, this was what they call "a bad day" for Mom. When I got over there at nine forty-five in the morning, she was still in bed, and Dad was rushing around trying to get his stuff together for another trip down town for an eye appointment and other errands. He got her out of bed, then I took over from there. Before I joined her in the bathroom, though, I read some notes Dad had wrote down in the notebook, both last night and early this morning.

Last night, she had moments of restlessness, then she ate fairly well at dinner and eventually settled down and watched television with Dad. By twenty minutes past eight, she wanted to go to bed. Around four in the morning, he was awoken by her trying to get up. He said she got up and down several times, eventually ending up on the toilet to pee. She had trouble wiping herself, and at one point, he wrote, she tried to put the toilet paper in her mouth. Back in bed, she began to babble, asking to "Go home," "Were the children okay," and even, "Where is my husband?" He finally gave in and gave her two of the Ativan pills (the mild sedatives), but they didn't seem to work, he thought.

After awhile, they fell back asleep, but naturally, it was harder for him to get back into a good sleep. Armed with this new information, I helped her at the toilet, then got her dressed. She moaned horribly about pain in one of her left toes, so once I had her settle in her chair in the living room and gave her her two morning pills and juice, I went and got a wash rag and soaked it in warm water and applied it to her toes. She said this made her feel better. I went on and made her a hard boiled egg, of which she ate three quarters of, plus most of half of a banana and a glass of Ensure. She stayed in the chair for a while with her eyes closed, listening to the music from the movie "Finnegens Wake," which was playing on Turner Classic Movies.

By this time, Dad was gone, and I just sat with Mom, eventually moving her to the couch. Around noon, the occupational therapist, Gwen, arrived, for her third visit with us, and I filled her in on the depressing events of the day. Gwen came and sat with Mom and asked her a few questions, one of them being, "Do you know where you are?" and Mom replied, "I'm home, in Maine." When I asked her that same question yesterday, she replied that she was home in Massachusetts. Go figure.

There wasn't a whole lot Gwen could do today, so I think just having her there, sitting and chatting, made it enough of an event to say something happened today. Mom's eyes were closed most of the time and she was much grumpier and short tempered then usual. Gwen reminded me that their are going to be good days and bad days, and this was one of the latter. We also managed to discuss my concern for Dad's health and sanity, like his inability to get a good night's sleep. She suggested I might consider sleeping over some night, so that Dad could sleep elsewhere in the house. I told her I had already considered that, and when I brought that up with Mom, I asked her if she thought that would be fun, and she said, "No, I don't think so."

The O.T. left, Dad came home, and I left to run some last minute errands for our planned afternoon dinner. When I got home, Dad called and admitted that he was just too tired to pack Mom up and come over here, so we agreed to pack up the meal and haul it over there. I was hoping Mom would perk up a little at the prospect of a little celebratory dinner, like she did last Saturday night with the rest of the family, but she remained kind of cranky and groggy. She did sit at the table with us, though, and ate a decent amount of the corned beef and veggies, and seemed to enjoy it. But soon enough, before any of the rest of us where finished eating, she wanted up, so I helped her up and back to her chair. She got up once or twice more as we finished eating, even coming back to her plate and eating another bite of food with her fingers, and then we cleared the dishes and I put out dessert. I had received a package in the mail yesterday with four speciality cupcakes shipped from California, with a card in the box that said "Thinking of you," from a wonderful friend and her husband up here. My friend just lost her mother to Alzheimer's Disease early last month, so her empathy for my experience is profound. I thought it appropriate to share these treats with my parents today, and they were delicious and unique.

I did the dishes and then stood in the hallway, while Mom was on the couch, and Dad began to share some day to day stuff with me. Soon enough, however, we were interrupted by Mom, who was disturbed by our conversation. So, Dad and I went and sat with her, turning off the television and quietly conversing for a few more minutes. Mom stirred then, and I helped her use the toilet. I was sitting on the bath tub in front of her, waiting for her to finish, and when she was done she said to me, "Tell the girl I'm ready now." "That's me, Mom, here we go," I replied, and helped her pull up her panties and pants. I settled her back onto the couch, and Dad said he thought he'd like to lie down on their bed for a nap, as much as he didn't want to mess up his sleep routine. Mom seemed content, so I decided to go home.

Back home, my partner and I discussed the situation some more. Mom was really confused a lot today, sometimes saying things completely out of context. At one point she said, "Come on, it's time to go." "Where?" I asked. "Next door! To our apartment!" Other times, just stuff that made no sense at all. Is today just a bad day? Will she be better tomorrow? How much longer can Dad go on without seriously jeopardizing his health? We know for a fact this is only going to get worse.

And then you begin to get pissed off about all the drugs. What's the point, you wonder, in "slowing down the disease," when it's only prolonging the confusion and suffering? How long do you try and keep them home, where they are loved and cared for, though they don't even know where they are anymore? How do you make decisions for people who can no longer make decisions for themselves?

My partner and I concluded that there simply is no "right" answer to the multi-faceted questions involved with this disease. Everybody reacts differently to all of the drugs and methods to alleviate the symptoms, and meanwhile, there is no cure and worse, the person continues to suffer a miserable existence until they die. On top of that, the care givers sacrifice and suffer, too. Have we done all we can? Is there more we could do? Who has the answers? Nobody, that's who.

Hopefully, tomorrow we'll see a brighter eyed Mom.