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.

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.

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.

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.  

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.

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.

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.

Communication And Eating

Yesterday it snowed all day, a warm, big fluffy flaked snow, totaling by the end of the day to nearly four inches. Dad left at ten in the morning, bound for a southeastern town an hour and a half away, check book in pocket. He was off to trade in his 2005 car and come back with a newer (2010) one. This was advise from the lawyer he met with earlier this month -  "spend your money on yourself!" No need to twist his arm. Off he went, and knowing this,  I allowed myself another forty five minutes at home while Maria was with Mom at the house.

When I arrived, Maria had Mom sitting quietly on the couch, and she was working on Mom's toenails and feet. She is so attentive. Mom's toenails were getting long. I sat with them as Maria changed the bandage on the ankle bone. Then I helped Maria strip the bed sheets on their bed and put fresh sheets on. Maria also quickly cleaned out the bath tub. She always stays later than we pay her for and does extra things. Her standards are high for such an under payed, under appreciated job!

After she left, all Mom was interested in was to lay on the couch with her eyes closed. I settled her in and let her do that as I put in a load of laundry and tidied up around the house a little. Dad called a few times through out the day to let us know where he was at in his process. When he'd call, I speak with him first, and then I'd pass the phone over to Mom, and she'd speak with him in her disjointed, overly loud speaking voice, sometimes stumbling over her words. Damn disease, taking away a person's ability to communicate.

Around one in the afternoon, I sat her down at the dining room table for a plate of brown rice and chicken, with a few heated up carrots on the side. She ate a few bites but quickly lost interest. She does love her cranberry juice though, which she has taken to calling the brown stuff. When she wants to stop, her breathing picks up and her eyes begin to wander. She starts to push the plate away from her and tries to get herself up out of the chair. She usually hasn't even finished chewing the last bite of food she had in her mouth while this is going on. I ask her to finish chewing and to swallow, then I put another bite of food on her fork and encourage her to take one more bite. Sometimes she accepts the food, but when she's done, she is done. She reels her head back and yells out, "I don't want anymore!" So, I drop it.

The rest of the afternoon, she rested on the couch. Towards the last hour or so before Dad got home around four, I read from the Cuba travel essay book. When Dad came home, we got up and went to look at the new car parked in the garage. We said that maybe tomorrow she could go for a ride in the car.

Mom is more confused, some moments are worse then others. Yesterday, when Dad got home, he took his pills at four o'clock, and we gave Mom her Haloperidol pill, too, after a two day break from it. We've started trying to keep better notes in the notebook.

I've bought some corn beef and cabbage and we plan on cooking that up today. The plan is to share that with Mom and Dad, either at our house or at theirs. We'll see how she's doing today. Dad has another appointment this morning, but hopefully, it won't be too long.

Tuesday

Yesterday I arrived about nine-thirty in the morning. Dad went off to get some stuff done, and I had a calm morning with Mom. She stayed in her chair most of the time, dozing off and on. We watched a movie and then I did some more reading aloud from the travel essays of Cuba. I made her an egg salad sandwich and she ate three or four bites, plus a few Sun Chips and a couple of carrot bites. Then I fed her a medium sized bowl of butter crunch flavored ice cream. I managed to talk her into going outside on the side porch for five minutes to sit in the early spring sunshine. Dad got home around two in the afternoon, and I took the rest of the day "off."

She's had two days off from the Haloperidol, and last night Dad called me after their dinner to say that he noticed Mom was getting antsy that afternoon, so we will start her back up on it this afternoon, probably at four, when he takes his pills.

Dad I discussed a few more things regarding the future. Not easy stuff to talk about.

Busy Weekend And A Mix Up

Okay, so I don't remember much about Friday, so it must have been fairly normal. I had a gig that night, so I left shortly after Dad returned home from his doctor's appointment and food shopping.

Saturday, my brother and my sister in law arrived around three in the afternoon, bearing gifts and wine and foods. About five, my sister arrived, and she brought fixings for an entire birthday dinner. We were celebrating my birthday (last Monday) and my sister in laws birthday, which is on the sixteenth. They all prepared some appetizers and the fantastic meal, and Mom had a lovely time. She ate well, enjoyed her glass of Riesling wine with ice cubes, and even giggled some, here and there. We ate cake and opened presents, then four of us retreated back to my house. My sister stayed over night at Mom and Dad's, and my brother and sister in law slept over at our house.

Sunday morning, brother and sister in law left early, while my older sister stayed until two in the afternoon. Dad left for church a little after nine, and I checked in next door around noon. All was calm - Mom was mostly dozing on the couch - and we were expecting a friend from church to arrive by one to stay with Mom so that Dad could attend a meeting after church. Before I left, I remembered that Mom was due for a dosage of her Halperidol at two, so I showed my sister where the pills were and she left them out so she wouldn't forget. What I forgot to do was to tell her to leave Dad a note stating that she had given Mom the pill.

This morning, Monday, I got over there by nine thirty so that Dad could run his car down to the mechanics place for an oil change, and then go down town to run some errands. When I got there, he told me that Mom was really lethargic this morning, and only ate half of a banana along with her pills and juice. When I looked at her, she did look groggy, and also pale. He left, I got Mom up and had her help me make their bed. I had her drink a whole glass of orange juice, then I settled her back down to the couch, swept up the kitchen floor and did their breakfast dishes.

When Dad got back, we discussed the weekend and the coming week a little more, and then I brought up with him if he thought we might be able to get away with giving her the Haloperidol pill at four every afternoon, so that it would be easier to remember, as he takes his pills every day at four. He agreed, and then began to tell me that he didn't give her that pill until three thirty in the afternoon on Sunday.

"Wait a minute," I interrupted him. "You gave her a pill on Sunday, too? SHIT! I had my sister give her one at two in the afternoon! I forgot to tell her to leave a note for you! Damn it!"

Needless to say, we understood now why Mom was extra groggy and pale today. She had also complained about feeling "sore all over" and that she couldn't understand why. Trying hard not to feel too guilty about this miscommunication, Dad and I agreed to give her extra slack for today, and also to skip her dose this afternoon. When the home health worker, Linda, showed up just as I was making them up a lunch/dinner, we told her about the mix up, and she advised to get a notebook to keep better track of things. Naturally, our main case worker, Nurse M., had advised us of that, as well, but we let that slip. Today, I brought one over from my house, so we will now keep better track of things.

Mom did get up, though, sit at the table, and ate a good amount of her meal. Then she agreed to let Linda freshen her up with just a little sponge bath and some other pampering. After that, we settled her back down onto the couch, Linda left, and we waited for our visit from Nurse M., who had called to say she would be a little bit late. I waited around for awhile, but then decided to leave, so I could get home to shower and go food shopping and other errands.

When I got back around four, Dad told me that Nurse M. said we could just skip the Haloperidol today, and that we could probably start back up on it tomorrow, if we thought Mom would need it. She seemed to think it wasn't too big of a deal. Phew~!

Mom got a little anxious around four thirty, wanting to start dinner, but when we said it was still a bit too early, she said she just wanted to take a nap then. No problem, Dad and I said, and settled her back into the couch and turned the Oprah show on quietly in the background. Dad and I discussed plans for the next few days, as well as plans for a meal tonight, and then I left. I'll head back over in the morning so that Dad can go back to the hospital for some blood work.

Thursday

Thursday, we just had one visit from the Occupational Therapist. She wanted to observe how Mom used the shower/bath chair, and Mom seemed to pass the test. She asked a few other questions, we asked a few questions about home safety, and then she scooted out (it was snowing and we were all concerned she might not be able to get out and up the road, but she did.)

Mom was pretty calm, for her. My observation is that the "haldol" is working to the point where it takes some of the compulsion to feel anxiety off. The confusion and anxiety is still there, but it is pulled back some by the drug. She wants to care, but now she's just too darn "chill" to care. I wouldn't want to see her on any higher of a dosage, as it's important to have Mom be as true to her core self as possible, I think.

The only other current frustration now is back to food, eating. Her appetite is fickle and Dad tries his best to create tasty, healthy meals. I pitch in when I can, make suggestions when I can, but short of me moving in there, I can't possibly be there and plan and organize every meal, every day, for them as well as my household. Besides, Dad likes to be in charge of all that.

Another rainy day, and today we should see Nurse M. and possibly the home health worker, too. Dad has an appointment with Dr. N. himself today, so I'll be over there with Mom while he goes to that.

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.

Morning Update From Dad

An email of morning updates from Dad, received a short while ago. I'm heading over now. Dad has to drive a half an hour away to pick up a rental car so he can have his car repaired.

She ate all but 4 pieces of the fried egg I chopped up into pieces, finished a glass of cranberry juice, took the 2 pills and finished a glass of Ensure (half bottle left over from yesterday).

I threw away the depends and gave her a second pair yesterday.  She took off her black shirt last night before I could stop her and I had to put it back on again.  That green t-shirt I got out might be a good replacement?

Maria actually called last night and I told her a little about the "new team."   Mom was agitated in bed when she called so I put the phone in front of her and she said to Maria, "I've been shouting!".  She said she had pain, like she often does, so Maria said to give her a Tylenol with apple sauce which I did.  About a half hour prior I had given her an Ativan but it didn't seem to do much.   I had to get her up after the Tylenol and let her sit in her chair.  About 9:30pm I got her back in bed.   She was still agitated off and on during the night.