One Week

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

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

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

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

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

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

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

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

Me and Mom in 1966

Waiting Again

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

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

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

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

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

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

Present

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Visit With Mom Today

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

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

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

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

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

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

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

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

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

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

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

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

Brief Phone Call

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

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

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

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.

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.

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.

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.

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.

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.

Snowy Friday

I trudged back through the falling snow after I had some lunch, arriving back over around twelve thirty. Dad still hadn't had lunch yet, so I put on some of the chicken soup I had made and brought over for him. For Mom, I took a cup of the soup and put it in the blender and pureed it. Then I put it in the microwave and heated it up. She did eat about ten or fifteen small teaspoons of the pureed soup. 

She was snotty. We worked on that. She went back to dozing. It was fairly quite there, with the snow falling and the wind howling. The phone did not ring like it had all the day before. I picked up a book of essays on the season of winter that I found in her bookshelf. One of the essays, by John Updike, had notes in it. Dad told me she had recited this essay at a church service a few years back. I could see where she had changed some of the words and lines to fit her message. I read the essay aloud to her, Dad listened in, too. Later, I read another essay on winter by a woman named Anne Dillard, I think it was. We got through most of that essay, when towards the end, Mom began to stir, and we knew it was time for the bathroom.

Through out the afternoon, when she did speak, her voice was very soft. Some of the things she said made sense, other things it was hard to know what she meant. The phone did ring one time in the mid afternoon, our neighbor giving Dad an update on things, and she managed to ask about that. This happened while we were slowly walking back from a bathroom break.

Dad and I were both impressed with her walking yesterday. It was stronger, her legs a little straighter. It still took a while to get going - her head is slumped down, her eyes will not rise, but it was less tottering. We were able to let her go for short moments and she was able to stand alone. But not for long. She peed several times, sometimes she was able to wipe herself, other times, not quite. Her confusion sometimes leads her to put the used toilet paper in the basked next to the throne instead of dropping it in the bowl.

She ate a few slices of canned pear in the later afternoon. Drank some more water. Spoke a little here and there, mostly with eyes closed. As I got ready to leave for the evening, around five, I was feeling kind of hopeful that Mom was getting stronger. Dad and I discussed what he could try and give her to eat, and I told him to call with a report later, if he wanted to.

Around six thirty, he did call. I had just sent a little hopeful email out to my siblings (we had all been emailing throughout the day), and was just beginning to relax a little, when he called sounding exasperated. He had tried to give her some food and drink and she was refusing everything. His back was getting sore from sitting in the little stool by her chair, trying to spoon feed her. By the time we hung up again, he had decided to try and give her some ice cream with perhaps, some sliced pears. He didn't ask me to walk back over on in the dark and snow, but after a few minutes, I decided to go back over. Mostly for moral support for Dad, really.

When I got there, he was proud that she did eat some of the ice cream and pear. I greeted her and asked if she would like any of the drink. NO. After a few minutes, we moved her to the couch. After another fifteen minutes, I helped Dad through the ritual of putting her to bed. The long slow walk to the bathroom. Toilet (nothing). Teeth brushing (she still does it herself, somehow.) Four pills (a little confusion, probably because I was there, but she did get them down.) And finally, into bed. The look on her face for those few moments when Dad has to lift her to get her in position, heart wrenching. We left her with kisses and good nights, on her back in her bed, asleep right away. 

I said goodnight, walked back out into the dark and snow, and felt numb. When I got home, my partner said, "How was it, grim?"

"Yep. It's grim." I replied, not for the first time.

Today is another day. Siblings appearing at some point. I have to decide if I want to go to play my gig tonight or not - I have a great friend willing to sub for me at last moments notice. Most important, Mom's well being. Food, drink and comfort. Saturday seems like such a long way away from Monday, when we can finally talk to her doctor again. Dad's post on the message board had quite a few good responses by late last night, and now I'm wondering if she does indeed have a urinary tract infection, or some other kind of infection, after all. She probably needs electrolytes. 

Our neighbor is pushing snow around in our driveway now. He'll go down and do Dad and Mom's driveway next. The sun is out. It's only nine in the morning. Got a lot more to do today. I'm okay, though.

A Long Day

Last night, Dad called me twice. The first time to tell me that he got her to the table and she ate a little bit of her dinner. The second time, at about nine-fifteen at night, he said that he got her to bed alright. We were both tired, but feeling a little hopeful that she would come out of this slump.

This morning I awoke early (for me) and got ready to head over before ten, when Maria was to show for Mom's bath time. I got there at nine-thirty, and Dad had managed to get her in the chair and she was drinking a glass of cranberry juice and taking her morning pills. Dad was holding the glass with the straw in it. Then I sat with her and tried to get her to eat half of a banana (which she ate only half of) while he went and fried up an egg. We put the tray on her lap and started helping her get the little pieces of egg to her mouth. She moved slow. She chewed slow. She didn't swallow very well, kind of like she didn't remember how to do it. Plus, she kept her eyes closed most of the time, and seemed to be nodding off in between bites. We finally gave up, her egg barely half way eaten. She nodded off.

Maria called, running late. She had called the night before to let Dad know that she did have a cold, but would be willing to come up and wear a face mask so she could work with Mom. Dad was able to fill her in then about what had happened in the last few days. Maria recommended we get some adult diapers, and to keep her drinking fluids.

Maria arrived just as we were finishing up with Mom on the toilet. She took one look at Mom and suggested we bring her to the bed. She planned on giving her a sponge bath today in the bed. She took her blood pressure (we had done that earlier, too, after Maria had called), and both times it was okay, over one hundred. Then she took her pulse, once on the wrist and once on her neck. Mom was lying with her eyes closed, sleeping, I guess. Maria quietly motioned me to come out of the bedroom with her. Dad was downstairs on the phone with the doctor's aide, making his check up call.

Maria came right out and said she thought it was time for us to call for hospice. I was shocked for a minute, but realized she was right. Maria admitted that she could be wrong, and that she did not want to sound dramatic, but her experience around very ill and dying people makes me trust her instinct. She told me about some of the details involved.. about how we could get a nurse in once or twice a week, how they would check all the vitals and do other work with Mom. Maria said we could take the special bed and commode and pads from our neighbor up the street, who lost his partner to dementia early last year and who Maria had worked with (that's how we found her.) She asked me if we had a large tee shirt around that we could cut up the back so it would be easy to get on and off. I found one at the bottom of her drawer that said "Ireland" on it. I cut it up the back.

Then Dad came up the stairs, and reported to us what the doctor's aide had said. That we should just hang in there, keep doing what we are doing. Finally, I was able to tell Dad what Maria had told me. We three discussed it some more, quietly, trying not to alert Mom. Mom and her razor sharp ears.

Dad agreed to look into it. We had a number of a reputable place already. He called them while Maria gave Mom a sponge bath and cleaned her all up, in her bed. He found out that they don't accept patients until we have the doctor's permission. He called the doctor's aide back. She said they would okay it, even if our Dr. N. was not around (vacation until next week.) Dad said he could wait until Dr. N. came home. I'm not sure what he's waiting for, but I guess nothing happens fast anyway.

Maria suggested we let Mom stay in bed for the day, maybe later she could get up. She showed me how to prop her head up and to give her a drink. Mom moaned and complained. We realized she had a cramp in her thigh. We gave her a Tylenol, I ran home and got my heating pad for her leg. Maria left, saying to call anytime. Mom fell back asleep. I went home for a quick lunch.

After an hour, I went back and Dad had just helped her to the bathroom. She was sleeping. Dad decided to run down town to buy some adult diapers, some medicated talc (for her underarms, Maria noticed redness), a blender so we can mix a banana up with the drinks (bananas are high in potassium, help with leg cramps), and some fresh bananas, strawberries and juice. While he was gone, I let Mom rest in her bedroom alone, while I sat and read in the living room.

After a while, I went in to see her. I offered her some water, she accepted. I laid on the bed with her, stroking her hair a little, answering her questions which made no sense. I just go with her reality, what else can I do? At last she stirred and she said she had to go to the bathroom. I lucked out again, Dad had just got home. He was able to help me get her out of the bed and onto the toilet. She moaned and wailed when we lifted her out of the bed. It was painful to hear.

She peed. She got up. She wanted to go back to bed. Dad was beginning to worry that she would sleep too much during the day and not sleep at night. We got her back into the bed, and I asked her to drink some more water. I put the straw to her lips, and she blew hard, bubbling and spilling some water on to her tee shirt. "You little rebel, you!" I said, and so we gave up on the water. She can be such a bad patient.

I put in a load of laundry, then Dad said he wanted to lie down for awhile, too. So, as he laid down next to Mom on their bed, I went home for awhile. Later, I went back to check the laundry. Dad had already put it in the dryer. I went back home. Then I went back over for (I hope) the last time, bringing chicken that my partner cooked that afternoon, for Dad's dinner. I made up a shake with protein powder, a banana, strawberries and milk, and put that in the fridge for her dinner. By that time, Dad had convinced her to sit in her chair for awhile, and she had drank a whole bottle of Ensure. But, she was sleeping in the chair by the time I got there.

I helped Dad get the rest of his dinner together, gave Mom some kisses goodnight (even though she was asleep) and left.

Mom may be heading into Stage Seven now. Or not. Hard to say. But probably. We'll see how she is tomorrow.

I Hate It When The Stars Don't Point

Just when we thought things were getting better, today was another set back.

Going back to Sunday, after our weekend house guest and my brother left for home, I went next door while my sister was staying with Mom on Sunday morning. Dad was off to church, and my sister was staying close with Mom, who was still in quite a stupor. However, when Mom did speak, her utterances where fairly lucid. My sister showed me how she was doing some Reiki on Mom, and showed me a couple of simple techniques to try on my own. I left Sunday early afternoon for my gig, feeling dubious, but  knowing there was not a lot I could do. I decided to take advantage of the extra help and tried to enjoy the rest of my day.

Monday morning I went over before noon. There appeared to be some improvement. Dad mentioned that Mom had "snapped" at him a few times, and was walking better. We were feeling hopeful, even though she still preferred to lay on the couch. She even snapped at me at one point in the afternoon. I was tired, so I left after several hours there, feeling confident that the worst was over.

Today, Dad had a hearing test planned for eleven in the morning. It was to take him an hour to drive there, so I was all set to walk over there before ten. Just before I left, I checked my email, and found he had written me about nine in the morning to inform me that he had cancelled his appointment. He wrote that Mom was still in bed. He had helped her use the toilet at six in the morning, and back in bed, she began babbling and acting out. He made the decision to give her one of the prescription mild sedatives. Well, two actually, but he thinks she spit the first one out, in a fit of defiance.

When I arrived at nine-forty five, she was still in bed, and as I was taking off my coat and boots and Dad was coming up the basement stairs, I could hear her moaning and babbling. When he and I entered the bedroom and told her we were going to get her up and dressed for the day, she complained. The sentences coming out of her mouth made no sense. She was cross referencing things and the words she said made no sense.

We somehow managed to get her out of the bed. Her legs were like jelly. She couldn't keep them straight. It took forever for the both of us to walk her to the toilet. Finally, she was on the john, and she peed. We switched out her panties for some fresh ones. She's been kind of smelly down there.

With a huge effort, we got her dressed and together we all wobbled into the living room and got her in her chair. I propped her head up with pillows the best I could. Dad brought her out her two Alzheimer's pills and some juice, as per their usual routine. She moved very slowly. The first pill, she ended up chewing. The second pill she swallowed. This took a long time. Then Dad fried her up an egg, and cut it up in tiny pieces. Very slowly, and with us feeding her, she ate. But she seemed to not remember how to swallow. I kept having to remind her to chew, then swallow. She ate about two thirds of the egg, plus a couple of bites of a Bosc pear I had brought over and cut up. Then she nodded off.

Dad called the doctor's aide and left a message. She finally called back and Dad told her everything he could remember, speaking for at least twenty minutes. Usually Mom is very aware when we are discussing her (in front of her), but she didn't seem to care today. The aide was going to talk to the doctor on call (our Dr. N. is on vacation this week), and get back to us.

Dad and I decided it would be okay if I left so I could do my grocery shopping. I was gone for about two hours. When I got back at one-thirty, Mom was napping in the chair, Dad was napping on the bed. I wiped some drool from Mom's chin, propped her back up a little, and then let her be. The aide called back and I answered, Dad never waking at the sound of the phone ringing. She told me that the doctor suggested we not give her anymore of the mild sedative (Aviton I think it's called, I'll double check the name), and if she's still drowsy tonight, then to skip the Remeron (which is the appetite stimulant / anti-depressant drug she's been on for a while now.) She reminded us to keep her drinking, especially high caloric drinks, and then she told me that we were doing a good job, to hang in there. She said to call with anymore concerns and to check in tomorrow.

We hung up just when I saw Mom stirring. I asked her, do you have to go to the bathroom? "Yes," she said. I hated to do it, but I went and woke Dad from his slumber, so he could help me get her out of the chair and onto the toilet. When it was time for Mom to get up from the toilet after peeing, I realized she hadn't wiped properly. I wiped for her. We changed her panties and her pants. We got her back to her chair. She went back into her stupor.

Dad left to do some banking and shopping. While he was gone, Mom managed to drink a glass of Ensure with a straw, and then rested. After a while, I saw her stir again. She had to go. This time she had to poop. Oh oh, I thought.

Somehow, I got her up from the chair. For a second there, I thought she was going to go in her pants. I begged her to hold it until we got to the toilet. Luckily, this time, once she got walking, she walked fairly fast. She sat and did her thing. This time, I took no chances. I put on a pair of latex gloves and did the dirty deed. Another first for me.

Dad got home just then, luckily, so he was able to help me get her off the toilet, pull her pants back up, walk her to the chair and settle her back down.

All through the afternoon, she said many things that made no sense to us, only to her. I wrote down one of them. "I hate it when the stars don't point." If only I knew what she meant.

I left around four, telling Dad to be sure to call me if he needed help with anything. I had asked her if she would eat dinner tonight, and she said she would. I could hear her stomach growling in hunger, but I couldn't get her to eat. She also had a drippy nose.

A crappy day. Hopefully, things will get better again.

Mystery Solved

Arriving at the house about eleven-thirty in the morning on Friday, I could see Mom was still in the same state as the day before. As I entered the living room to greet Mom, Dad came up the stairs and was eager to tell me of his phone conversations with the doctor's office and the pharmacy. After investigation, it was discovered that the pharmacy was at fault for giving the wrong dosage of the Haloperidol. I was correct in remembering the amount was .5 milligrams.

She ingested 5 milligrams. Once on Tuesday afternoon after the doctor's appointment, and once on Wednesday afternoon after the ladies luncheon.

Short of fantasizing about getting restitution from the pharmacy (who were very embarrassed and apologetic, and naturally, will replace the drug at no cost..), the important thing is we were right, this time, about the drug having that effect on Mom. It's been decided that we will wait several days for the strong dosage to get out of her system, then start back up again with the correct dosage. Because we noticed a remarkable difference in her manner on this drug.. Moments of the "old Mom" showed through, although she could hardly stand up and walk on her own.

Relieved to have made that discovery, I helped Dad get Mom settled at the dining room table so they could eat some soup. Mom was very weak, so I spoon fed her a little bit to get her started, then she ate a few spoonfuls on her own. After lunch and a bathroom break, she settled back into her chair, and eventually, Dad ran out to the market.

While Dad was away, I read a short story out of The New Yorker to her ("Axis" by Alice Munro), and she enjoyed that. Then I turned the television on real low, and helped her settle into the couch. She drifted in and out of sleep. I worked on a crossword puzzle.

The phone rang once. Dad had a question about the grocery list. Mom smiled at the misunderstanding. Later, the phone rang a second time. This time it was Dad informing me that he had just had a fender bender, he was okay, but would be a little bit longer filling out the paper work.

Great, I thought. Just what we need, more stress. But, Mom was either asleep during the phone call or too tired to care, because she never asked me what Dad wanted, so I didn't bother telling her. He was able to drive home in the Suburu, with the whole front of the vehicle's bumper jammed in the back seats. When he got back, he was able to call the insurance company. Mom was still in the dark about the car. Good, no need to worry her any more.

So, I left to go shopping myself. My brother and a friend came up to visit and play music. My sister is arriving this afternoon for an over night and to stay with Mom on Sunday while Dad is in church. So, more respite, a little fun, problems getting worked out, mysteries getting solved.

Puzzling

Yesterday, Mom had her bath and was game for the ladies luncheon. I offered to go, but we all decided that I could stay home. I jumped on the opportunity of having their house empty and cleaned for four hours.

They got back around three, and I checked in with them around four. Mom was alert, but calm. It was quite noticeable to me. She was able to respond to my questions about her experiences at lunch well, and though she yawned a bit, she seemed bright eyed and mellow. I was hopeful, and left them alone after about an hour.

This afternoon, just after lunch, I stopped in to pick up recyclables to bring to the transfer station. When I walked in, Mom was in the chair, partially slumped over. Dad came up and said she had been like that all morning. When I looked at her, it was remarkable how different her face appeared from yesterday. Her eyes seemed dull and her affect was flat. She told me she slept poorly, that she had vivid dream activity all night and also that her body felt "achy." "Like a fever achy?" I asked. "No." She replied. Hmm.

I ran out to drop off the trash, then went back over around one-thirty in the afternoon. She was in her chair, slumped and sleepy. The television had been on all morning. Dad said she ate very little of her soup for lunch, but ate up her egg and a whole bottle of Ensure for breakfast. Before Dad went downstairs to take a nap, he and I discussed whether or not he should call the doctor. When he came back up around three in the afternoon, it was coming up to the time she was supposed to ingest the new pill, but we opted out. She just seemed way too sleepy and dull. Though, again, when I looked her the eye, she did smile and "see" me... I don't know.

I got her up for a bathroom break and some short walking. We went downstairs when the phone rang and Dad was talking.....she wanted to know who it was. When he hung up, he told us that it was the woman who runs our local Alzheimer's support group, informing him of the care givers training sessions starting up in early March. Six weeks, two hours, four-thirty to six-thirty, once a week. Not a very convenient time.. We are still considering it. If we both go, we'd have to find somebody to sit with Mom for three or more hours once a week at night.  Gulp.

When I left at four, she admitted she was super tired. Yet, she did speak quite coherently when questioned, and she did not act strange.. except for her extreme tiredness. Puzzling.

Is it the new anti-psychotic drug? Or is it that she's just burnt from three days in a row of going out? Or is it that she's tired from a bad night's sleep? Or is it just the Alzheimer's Disease pushing down on her?

We'll see how she is tomorrow, then take it from there. Probably not good to take her off the prescribed drug, but it just didn't seem necessary today. If need be, Dad will get in touch with Dr. N.'s assistant tomorrow. He's supposed to check in with her about Mom's reactions to the new drug on Tuesday anyway.

Follow Up Doctor Visit

Mom's follow up appointment with Dr. N. went as well as could be. We got there at just the right time, so there was no waiting in the waiting room. We did have to wait in the exam room for about ten minutes, but at least Mom didn't have to undress, so we managed to pass the time in the little room until the doctor arrived.

He's a wonderfully patient and observant doctor, as all doctor's should be, and the consult was fairly short. After mentioning to him that the "sundowners" is still one of the more disturbing "side effects" of the Alzheimer Disease, he prescribed a new drug for Mom called Haloperidol. This drug is actually an anti-psychotic, often prescribed to people afflicted with schizophrenia. It's a very tiny dosage (I think it was .5 milligrams, but I'll have to double check), and we were told to give it to her everyday around two in the afternoon.

The side effects? The usual. I'm not crazy about all these drugs going into her system, and I'm quite sure the "old Mom" wouldn't be either, but if they help her from experiencing moments of complete and utter confusion and hysteria, I suppose it's worth using them. At least Dad and I still practice the most effective "treatment," which is support, guidance, love and understanding. Mom wants some chocolate at four-thirty in the afternoon, just before dinner? Fine. Mom wants to lie down on the couch at ten-thirty in the morning? Fine. Mom wants to get up and walk around the table? No problem. As long as we keep her fluid and without fear and anxiety, this seems to be the best treatment for this nasty, unforgiving disease.

So, with the new prescription in hand, a promise to check in by phone with the doctor's aide in one week, and a new appointment set for three months from now, we got back in the car, escaping the frigid February air, and quietly drove back to our town. We stopped at a bank, then at the drug store, then Dad ran into the market to pick up a few things. All this time, Mom remained calm and quite. She had her sunglasses on, and I'm quiet sure she had her eyes closed. I didn't push her to talk while we were waiting in the car. Best to let her rest.

Back home, we helped her take off her coat and mittens and scarf and shoes, and all she wanted to do was get back to her couch and rest. I left them while Dad was preparing their lunch, and a couple of hours later, I went back for an hour or so. Mom lay quietly on the couch the whole time, and Dad told me he gave Mom her dose of the new drug around three in the afternoon. At four, when it was time for me to leave, she was still fairly calm, but I don't know what happened after I left. Probably too soon to know how much of an effect the Haloperidol will have on her behavior yet.

This morning she has her bath with Maria, and then she's been invited to the ladies luncheon. I'm assuming she'll go, and perhaps I should go, too, but neither one asked me to. She might be okay, but all I know is, everything is tiring to her. Just being awake is tiring to her.

You just want to hug her and kiss her all over, anything to take away her suffering. Once in a while she still smiles, sometimes she "cracks a joke." Sometimes the "old Mom" says something, sometimes the confused Mom says something you can't quite understand. Often she yells at Dad, kind of "blaming" him for her suffering, which is only natural, and he continues to be strong. He doesn't take it personally. He is always aware that her brain is injured and she can not help her behaviors.

Dentist Visit

Yesterday Mom and Dad had appointments with the dental hygienist. We got Mom settled in the car and Dad drove us to the office, which is nearly half an hour away. We took our time, we were early. Dad brought along two of the mild prescription sedatives just in case, but we never did need to use them.

We parked in the icy parking lot of the office, and with Mom holding each of our hands, we walked with her to the door. The office is in the basement of a large brick building, and the entrance way to the office includes a set of steep, carpeted stairs down a dark, wood paneled passageway. Once in the waiting room, a low-ceilinged, fluorescent lit space, drab decor and soft pop rock playing just a little too loud coming from an old radio on one of the tables, we scuffled about undressing Mom from her coat and mittens and hat, finally settling her in to a chair to wait for her appointment. While Dad went to use the bathroom, Mom saw another waiting patient reading a soft cover book, and she asked aloud, "what is that you're reading?," but the woman pretended to have not heard, and I hushed her down. Waiting is the hardest part, and Mom always wants to chat with other people in the room.

Finally, Dad reappeared and the very friendly hygienist called her in for her appointment. Dad was able to go along, and I was alone for forty minutes or so with my book, the a-little too loud soft pop rock (playing requests for Valentine's Day, no less), and one or two waiting patients. I buried my nose in the book ("Lost In Translation," Nicole Mones) and the time went by easily.

Mom's appointment then was finished, and Dad proudly told me that "she did pretty good in there" and that she had no cavities. That was a relief. Then we had to wait some more. We stalled by putting on Mom's coat, as it was a little chilly in the waiting room, and at last, the friendly hygienist called out Dad's name and we said good bye to him and then it was time to wait some more.

I tried to show her a magazine, she was not interested. She complained about the music, that it was bothering her. I was able to reach over and turn the radio down. Their was an older woman sitting to my left, and she was chatting with another woman friend who had just come out of an appointment. Mom listened in. "Did you hear what she said?" Mom whispered to me. "No, not really Mom."

More time passed, Mom started getting antsy. "Want to walk around a bit?" "Okay." We got up, circled the room. She looked at the older woman who was still waiting, her friend had left and so she was quietly reading a magazine. She had a large shiny gold purse, unusual for an older country woman from Maine, and Mom walked towards it and started to try and say something, looking at the woman and the purse. The woman smiled, picked up her purse, and remarked to Mom that, "Yes, many people are drawn to this bag for some reason." Mom wanted to communicate, but wasn't really able to, but thankfully, this woman had a sense and quickly summed up the situation. As I encouraged Mom by the hand to continue to walk around the room, the woman said aloud, "Are these your parents?"

"Yes they are," I replied, proudly.

"Enjoy every moment with them. You are an angel."

Mom said, "Yes, she is an angel, a God send!"

And I thanked the woman as we circled back around and said, "Oh believe me, I do. It's a blessing."

And she smiled knowingly and said, somewhat softer towards Mom, "You are very lucky to have a daughter like her."

Then I felt bad that I couldn't be her daughter, too, right then, but naturally, I was distracted with keeping Mom from walking into the work rooms of the dentist.

Finally we were alone in the room, and we took a new seat at the large couch. Mom complained of being tired. I told her to shut her eyes. She did for a few minutes, then I distracted her for another few minutes with a magazine on birds, featuring hummingbirds. We looked through that, looked at the glossy photos of birds and flowers and gardens, her attention wavering after a few seconds, so I'd move on to the next page to keep her down and distracted.

"What time is it?" she'd ask.

"Um, let's see..." stretching time as long as I can, reaching into my coat pocket to grab my little cell phone, checking the time at last, "it's two twenty-five."

"Oh God!!"

Like it's the end of time, the end of the world. I'd rub her back then, tell her to close her eyes, it won't be too much longer now. However, Dad's appointment was a bit longer than Mom's.. he had an issue, and it was dragging on. Finally, Mom called out to one of the receptionists... "How long? Can you find out how long it's going to be?"

The two receptionists had been witness to our entire time there, of course, so with a smile, the one she asked said, "No problem, I'll find out," and was back shortly with the answer, "Just a few more minutes now."

I couldn't have said it any better myself! Welcome to my world.

Mom was in agony, she started saying out loud, "Oh God, Oh God!" She almost lost it. We got up and walked around the room a few more times. Finally, Mom started pulling me into the patient room area... I looked pleadingly at the friendly receptionists.. "Is it okay if we take a quick look?"

"Oh sure, go ahead!" And no sooner did we turn the corner when we saw Dad standing up, folding up a piece of paper. He didn't see us. Mom quickly pulled me back. She did not want Dad to see her looking for him.

At last, he appeared. Dad checked out. Back up the dark, carpeted stairway we went, out to the icy parking lot, buckled into the car, and on the road for home. The hardest appointment of the week is over, I think. Today, we visit the primary care doctor.

Hitting Close To Home

I have an extra hour this morning. The choir director at Dad's church is on vacation this week, so they are not rehearsing. Dad will just go in for the service, and I can go over a little later. Of course, he offered to take her to the service with him, but she said something about not being able to get up to "dress code." In other words, she looks pretty crappy, compared to usual. It's hard enough to get her to bathe once a week with our helper, Maria. Towards the end of the week, her hair and clothes get pretty messy. So, she'll stay home, but a couple of the lady's from church are coming over a few hours after church to hang with her, and that should be nice.

This is going to be a tough week. Monday (with some snow coming), Dad and Mom have teeth cleaning appointments at the dentist. Dad has called ahead to let them know of her condition, and they said it would be okay if Dad sat with Mom while she gets her teeth cleaned. I will come along, too, and sit with Mom in the waiting room while Dad gets his teeth cleaned. That should be interesting. We may bring along the mild sedatives in case she gets too wound up.

Then, Tuesday morning, she has her appointment follow up with Dr. N., her primary care physician. I'll go along with them for that, as well.

Wednesday morning, Maria comes for bath day, and then Mom has been invited to a lady's luncheon with the gals from church. She has said she would attend, but who knows, by then, she may be too exhausted and refuse to go. Actually, she's exhausted all the time, even though all she does is rest. She's tired because of her brain.

We finished reading "Sons And Lovers." The end was sad when the mother died. It dragged out for pages and pages, and when I was finishing up that chapter, and we were heading into "sundowners" time, Mom was getting really agitated and upset. But the next day we finished the book, and it was actually me that was tearing up while I read aloud the burial of the mother. Hitting damn close to home, there. Mom stopped me and said, "Are you crying?" And I said, "Yes, so sad. The mother has been an important character in the whole story, it's sad to see her go." "Yes," she replied, and then I quickly read on and finished the book.

I took all of Friday off, as we had to put our old cat to sleep that day. It came up quickly and as a surprise, with two vet hospital visits, the second visit to have him euthanized. I was pretty teary-eyed and sad and tired from all that, so I thought it best Mom didn't see me like that. She was very sweet on Friday night and called to offer to have she and Dad take us out to dinner that night. That's the kind of thing she would have done in earlier times, my partner noted. Of course, we declined, thanking her for being so sweet. Honestly, we were too emotionally drained, and going out to dinner with Mom would have been even more tiring!

Yesterday afternoon, as her "sundowners" kicked in, she once again made a comment about feeling like it was "time to go home, to Mom and Daddy's house." Dad calmly replied, "No, Kate is going home to her house and we are staying here in our house." Then Mom said, "Oh, it must be the disease." She goes in and out of the two realities.. the one we know, and the one that the Alzheimer's presents to her.

A girl friend of mine just lost her mother on Friday to this disease. She was with her right up to the end, and she is full of love and humbled by her mother's strength. Her mother's death hits close to home for me, too. I am constantly reminded of how lucky I am to have these moments with my mother and my father, the good and the bad.