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.

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.

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!

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.

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.

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.

Support All Around

When I arrived yesterday morning, Maria was kneeling by Mom, who was sitting in a chair, and plucking a few hairs off her chin. Mom was all cleaned up from her bath, and the two were very quiet and peaceful. Let me just say here that I think Maria is very special. She has empathy and genuinely cares about the well fare of others, especially seniors with dementia and Alzheimer Disease. She goes above and beyond, and for that, I am inspired and grateful.

As Maria was finishing up, Dad came up and expressed his concern about Mom's lack of spunk, but Maria did not think we needed to worry. She did think, though, that we needed to bring up the rash on the front part of Mom's leg, just above the ankle, to the nurse again. Nurse M. had told us to apply Cortezone on it, which I have been doing once a day, but Maria seemed concerned that it was still not better.

After she left, Mom sat quietly for awhile, and Dad went to the post office. When he came back, he was excited to show us the giant box he received. It was the bed bar he ordered, and perfect timing, because Brian, the physical therapist who suggested we get it, was due to arrive at any moment. Dad and I took it out of the boxes, and when Brian showed up, the first thing we did with his help was strap it on the bed. Once it was on, Brian showed Mom how to use it. He then did a bunch of exercises with her. She really seems to respond well to him, and she seems to enjoy doing the little routines, counting out loud. It is really cute how she sometimes skips numbers ahead. Well, cute might be trivializing her condition, but sorry. It just is.

After the P.T. finished his exercises with Mom, he wrote up his report on his little computer, and told us that the next time he comes, he'll have a little routine and sketches to leave with us so that we can help Mom with strengthening exercises in the future. Then I left and drove down town to the little community center to attend the care-givers support group. Their were seven other women in attendance, in addition to the woman who runs the group, and almost everybody is a caregiver for somebody with Alzheimer's or dementia. The session involved a lot of sharing, a little bit of crying, and plenty of empathetic support.

I stopped at the store on the way home and picked up a few groceries for my household, as well as some cans of organic soups, bananas and a little potted spring plant for Mom and Dad, then went home to rest for a couple of hours. At five forty-five, I drove back next door and stayed with Mom so that Dad could attend his board meeting at the church. Mom was real mellow and sat in the chair while I did their dinner dishes and a few other little things, then I helped her get settled on the couch around six forty-five, and that was were she stayed until almost nine at night, when Dad got home. She slept for most of the time.

Just before Dad got home, I roused her from the couch and suggested we start getting ready for bed. I wanted to get as much done as possible before Dad got home, because I knew he was tired. However, he got home before we could begin the ritual, so I let him take over, for her sake. As I was putting on my boots, I could hear them in the bathroom, and Dad lamented, "How am I going to take this sweater off?" (It was a thick blue turtle neck sweater, but still fairly loose.) When I entered the bathroom to assist, Mom was so tired and defeated, she just started crying like a little baby. No tears, just whimpering. It was so sad. We told her it was okay, and somehow, Dad and I managed to pull the sweater off her head. I kissed her on the cheek and told her it was okay, and that I'd see them both in the morning. She stopped crying and said good night.

Dad just called, and we'll have a visit from the occupational therapist, Gwen, within the hour.

The Last Few Days

Just a quick recap for the record.. what I can remember, that is.

I didn't spend a lot of time with Mom on Saturday, as brother was up. He stayed with Mom for awhile so that Dad and I could both go out and run errands during the same time.. a rarity. Naturally, we ran into each other at the market, anyway! This day, too, we started her back up again on correct .5 mg dosage of Haloperidol.

Sunday morning, brother got over there early so Dad could go to church. I was able to have some free time in the morning, then went over and hung with both of them for a couple of hours. Mom was still fussy with food and wanting to sleep a lot.

Monday was my birthday. I visited around eleven-thirty. Mom was okay, a little bit perkier than a week ago, although still fussy about foods. She's also taken to lashing out (verbally) at Dad, very impatient and short with whatever he says. Monday morning, a home health woman came by, Jackie, and gave Mom a sponge bath, washed her hair, and brushed her teeth. I hung around while Dad ran errands that afternoon, and Mom and I did a little reading from a book of travel essays about Cuba. I left around four in the afternoon.

Tuesday got over just before noon. Dad said that Mom was very sleepy the night before, but not too bad behavioral wise. That morning though, he expressed frustration with her "being ornery." It's mostly about her lack of appetite that makes him annoyed, I think. He also mentioned that she had had an "accident," but we think it was just from lack of getting to the bathroom on time, versus incontinence. He cleaned her up and she continued on on the john with a regular bowel movement. She didn't seem too upset by the event.

Nurse M. showed up a little after noon, shortly after Mom nibbled on a couple of pieces of toast and grapes. Nurse M. immediately recognized that Mom appeared to exhibit less anxiety with her arrival, noting Mom's brighter eyes and smile. Though Mom still expressed confusion about Nurse M.'s name, as well as "what road do we live on," she really was less anxious. Her restlessness at the consultation was notably less, I thought, too. Halfway through their meeting, Dad told me he was tired and went downstairs to grab a little nap. Nurse M. checked Mom's ankle and her vitals, after interviewing about the medications and reactions. We decided to maintain the level of the Haloperidol for at the very least a few more days. After next week, Nurse M. will visit less often for a week.

I read more from the Cuba essays to Mom, and encouraged her to drink and eat a little more. Dad came up from his nap and went out to run errands. When he came home, after settling in, he came and sat on the couch and Mom laid her head in his lap. She does seem to get more sleepy in the afternoon, probably because of the drug, but her confusion about where she is seems to be a little bit less.. or, at least, she's bringing the subject up less.

Today, Wednesday March ninth, Maria comes to work with Mom at ten. Dad and I decided that I will got to the monthly Alzheimer's support group at one, down at our local community center. Tonight, Dad has a board meeting, so I will stay with Mom until he comes home. More snow coming later tonight, unfortunately, but switching over to rain by Thursday night.

****
Okay, just got a phone call from Dad now, a little before ten. He was worried because Mom was very groggy this morning and out of it, and she was very wobbly when she first got out of bed. She did eat most of her breakfast, but then had a loose stool, which he had to help clean up. He said she fell back asleep in her chair after all that. I asked if she was drooling or speaking softly, but he didn't think so. I told him to call Nurse M. about all this.

Damn drugs and their damn side effects.

How Lucky We Are

I got over there close to eleven in the morning today, and Mom greeted me loudly from her chair. "Hi Kate!"

She had eaten a little for breakfast, and we had a big day planned. Three visits from the hospice agency.

I started to read an article to her from an older issue of the New Yorker about the writer George Elliot, and towards the end, we received our first visit from our primary case worker, Nurse M. around twelve fifteen, shortly after Mom ate a few bites of toast with bacon slices on it that Dad had prepared for her. Nurse M. checked her ankle. Both issues were looking better (a rash on the front part of her leg just above the ankle bone, and a bed sore on her ankle bone.) She checked her vitals (BP good, pulse good) and checked her temperature (normal.) She asked a few questions, while Mom wandered from couch to chair to walking about, and then she left, saying she'd call on Monday morning to set up another visit for that day. She also called Mom's primary doctor, Dr. N., to inquire about when it would be okay to start up on the Haloperidol drug. The doctor's assistant did call back later in the afternoon to say that the doctor thought it would be okay to start her up on that Saturday at two in the afternoon.

We had about half an hour or more before our next visit. I settled Mom down again on the couch, and I finished up the George Elliot article, and soon enough, our next professional walked in the door, the physical therapist, Brian, a seasoned, young man with a wonderful and warm bedside manner. He got right down to business with Mom, evaluating her mobility and the space she lives in. Mom became quite animated with Brian, and he was very charming and understanding with her busy bee like urges. When she proclaimed that all she wanted to do was lie in her bed and go to sleep, he told her that that was fine, and followed her to the bedroom and observed how she got in the bed. Then he showed her (and Dad and me) a few exercises, testing her strength in her legs. She did quite well, and seemed to respond favorably to his inquiries. He also recommended we look into purchasing a handle for her side of the bed, which we could purchase on line. It's a rail we can easily add to the bed to aid in her mobility in getting in and out of bed. He was great, and will come back a week from today.

We had another period of respite, where Mom retreated back to the couch and I read aloud to her some more from New Yorker magazines. Finally, our third visitor arrived, a home health aide named Jackie, and she was all business and was ready to give Mom a sponge bath. Mom protested quite a bit, but eventually, she subsided and did quite well. I wasn't one hundred percent thrilled with Jackie, but, she was professional and very nice. Mom, again, was very animated with her and mentioned that she looked familiar to her. Mom got sponge bathed, a new shirt and panties (well, adult diapers), and a little more "get to know each other" conversation, and then Jackie left.

Dad had left to run some errands shortly after Jackie showed up, and after Jackie left, I let Mom settle back into the couch for a well deserved rest. I read aloud a short article from the New Yorker to her, a recount of a man's time spent in a private school in Wales when he was stealing books from the library, and when I finished, I saw that Mom was sleeping, so I just sat there reading alone and let her rest.

Finally, Dad came back with fresh groceries and pills. Mom and I put away the food, Dad took his pills and retrieved wood from the woodpile for tonight's fire in the wood stove, changed his shoes, and then I insisted that he sit with her quietly for awhile on the couch. Then, I was able to leave. I got home a little after four-thirty. A long day for me, and it's not over yet. Phone calls and band business, dinner and visit from my brother, who is coming up tonight out of the kindness and compassion in his heart for his mother. Sister wanted to come up, too, but was too pressured with work obligations, but we'll be just fine. It's probably for the better this weekend anyway. Mom has really been expressing massive confusion the last few days about where she is, where she's from and where she's going. Also, who lives there, where I live, where my siblings live.

Despite all that, she is much more mobile and verbal, and their are small moments of clarity and understanding for her. The only really, really sad part for me today was when at one point, just she and I alone, she asked me, "Am I going to be this way for the rest of my life?"

How could I answer that question? I decided to just go with the truth, counting on her short-term memory to erase my answer. "Sadly, Mom, yes, you will be."

After a long pause, I added, "But that doesn't take away how much we love and care about each other, and how lucky we are to have that."

"Yes," she replied.

Busy Day

Yesterday, we had the weekly visit from Maria. Mom got all cleaned up and in fresh duds. She had been wearing the old black "Ireland" tee shirt, panties, socks and the purple bathrobe for an entire week now, so it was nice to see her in clothes again. Maria did her usual wonderful job working with Mom. Maria told me that when Mom yells, to tell her quietly not to yell. She is always full of wonderful practical pieces of information and suggestions, such as offering Mom a dollop of peanut butter on a cracker, or tuna on a very small piece of bread.. anything to get a little bit of protein in her.

Dad had left to go drop off his car at the auto body shop, and Maria stayed on a bit longer than she needed to, but that's how helpful she is. After Mom was dressed and pampered, we managed to get her to sit on the other couch for awhile, in a somewhat upright position.. but nothing lasted for long. She was terribly disorientated all day... expressing a lot of confusion about where she was, where she was going, how we got here.. who we are.. At one point, Maria told me she thought Mom was heading into the final stage, stage seven. I told her I agreed.

After Maria left, one of the therapists called for an initial meeting with us. Though I wasn't sure if Dad was going to be back yet, I agreed for a one o'clock appointment. Luckily, Dad did arrive home a few minutes before one, and not a moment too soon, because Mom was beginning to get really agitated at that point. She made a big deal out of Dad coming home. He has been tied up lately, not to mention exhausted.

The new occupational therapist arrived a little after one, Gwen, and she was wonderful, patient and calm. At this point, Mom was really agitated. Up and down and babbling lot's of things. It's heartbreaking to see how confused she has become. We tried having a four-way meeting in the living room, but eventually, Gwen suggested she and Dad go somewhere else. They went into the bedroom and talked while I kept Mom occupied. She just could not sit still, yet all she really wanted to do was sleep, to get away from the confusion.

After Gwen left around two-thirty, I ran home for a half an hour. When I got back, Mom and Dad were sitting quietly at the dining room table eating a bran muffin. Maria had brought over four bran muffins and a whole lemon meringue pie (of which we managed to get a few bites into Mom while Maria was there.) By this time, Dad really need to rest a bit himself, so again, I tried to keep Mom occupied so Dad could have a few moments to himself.

Then, a little after three, our nurse showed up. Mom seemed happy to see her, despite her exhaustion. She asked some more questions, and I pointed out the rash and the sore on Mom's right ankle bone that Maria had discovered. Nurse M. put a salve and a bandage on the ankle bone, and suggested some cortisone cream for the rash. Dad was able to bring up that Mom's sleep patterns are shifting and keeping him awake. Nurse M. suggested we try and keep her more active throughout the day, and to not be shy from giving Mom two of the Ativan (Lorazepam) sedative's instead of just one.

Nurse M. left and plans to come again on Friday. Friday we will also meet the physical therapist for the first time. Today, Thursday, nobody is coming, so I plan on getting over there as soon as I can to keep Mom occupied as much as I can. She did spend a lot of time sleeping on the couch when I stayed with her alone on Tuesday, so that could explain some of the irregular sleep patterns.

After Nurse M. left, around four-thirty, I stayed with Mom a little longer so that Dad could just sit quietly for a moment. She is walking better now, so we walked a bit, sang our "Left left" march, and I brought her into the kitchen to help put away the dishes from the dry rack. I gave her a napkin and told her to wipe up around the counters. She did all this without any complaint. We looked out the front door at the snow and ice melting. We walked around the first floor. Finally, we waked by their bed and she asked me to let her lie down there. I decided this wouldn't be so bad, so up she went, and when I tucked her in under the blanket she said to me, "You don't know how grateful I am for this."

Indeed, for us, too. She stayed quiet for a while, Dad came to from his little snooze in the chair, and I headed home. I told him to call if he needed me, but I never heard from him. Hopefully, they both got a decent night's rest.