Dreams And Reality

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

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

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

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

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

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

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

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

April 29, 2011

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

Crazy Day

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

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

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

The Calm And Winding Road

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

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

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

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

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

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

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

Facing Fears

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

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

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

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

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

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

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

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

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

Scrambled Emotions

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

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

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

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

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

Email Morning Report From Dad

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

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

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

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

Harmonious Long Day

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

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

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

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

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

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

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

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

April 19, 2011

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

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

Changes

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

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

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

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

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

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

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

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

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

Friday

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

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

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

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

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

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

Care Plan, Distraction Tips

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

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

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

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

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

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

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

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

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

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

Bittersweet Acceptance

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

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

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

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

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

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

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

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

Sleepless Nights, Confusing Days

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

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

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

April 11, 2011

April 11, 2011

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

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

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

Home

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

April 8, 2011

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

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

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

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

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

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

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

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

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

Waiting

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

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

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

April 6, 2011

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

Of course, I could be wrong.

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

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

Another Day With Mom

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

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

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

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

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

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

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

Sunday Afternoon In Early April

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

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

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

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

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