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.

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.

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.

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.

Respite And Gratitude

It's been a fairly quite week with Mom. The cold and snow has kept us all in, with short trips in and out for supplies or events for Dad and me in between our times with Mom.

The re-introduction of the Namenda drug seems to have helped bring her back to a little bit of a more calm state, though she is still panting during movement and sleeping most of the time. I can't wait until warmer weather so we can start getting her back outside for little walks.. I do worry that she's sitting and laying down too much. Her eating is still finicky and light, but at least she eats dinner fairly well, from what I hear from Dad.

One of the biggest gifts Dad and I have gotten the last few days is some respite. Friday night, the twenty-eighth of January, I had a big and important gig to perform in, and Dad wanted to attend the ninth anniversary of the open mic held at the basement of his church. One of the women at the church offered to come over to their house at six o'clock on that night to sit with Mom for a few hours. Mom was not too happy about the thought of it, but from what I was told, once the woman got there, she had a nice time.

Then on Sunday, my younger brother and my sister-in-law, two very very busy people who live almost three hours away, drove all the way up here and arrived at Mom and Dad's on Sunday morning at ten forty-five in the morning! I was practically in tears at their effort! I was able to leave early and have plenty of morning time to get ready for my gig, and Dad was able to linger after church and do some errands in the early afternoon. My brother and his wife left sometime around four in the afternoon.. unbelievable! So wonderful. This is the kind of team work that makes such a big difference in caring for a person with Alzheimer's Disease.

I am about halfway through reading aloud "Sons And Lovers," and though Mom still has to stop me to ask for clarification on characters and events at times, we are plugging through the story and both enjoying the dense, yet beautiful, writing. She still stops to correct me when I pronounce a word wrong.

I continue to have warm, empathetic support from friends. I was introduced to an old friend of a good friend of mine at the big gig the other night, and when I shared with him this life stage I am going through with my parents, his comments were so uplifting and soul soothing. To paraphrase;

"Enjoy these moments. Yes, she will die, so what? That doesn't take away her spirit in you, the memories you have of her. She will never go away in your heart..."

I whole heartedly agree.

Thank you to my family and friends for your help and understanding. It is reassuring and uplifting and it eases so much of the sad emotional burden that could so easily weigh me down. I am quite sure Dad would concur.

Leveling Out?

I don't know, my experience with Mom in the last couple of days have been not so bad.

Wednesday night, I went over a little before six p.m. to stay with Mom so Dad could attend a meeting at the church. She was alert and calm all night! I pulled out a book of Christmas carols and we sang some of the songs for a little while. She really enjoyed that.

She's been watching a LOT of Turner Classic Movies lately, maybe too much, so she was not upset when I turned the channel to Fox and we watched a couple of episodes of "Two And A Half Men" reruns, in between Celtics basketball pre-game analysis and the game. She only asked me a couple of times what time it was. At eight o'clock, I turned it over to the program I watch, "Survivor," and she didn't mind watching that either. Once and a while, her eyes would get droopy, but she didn't sag down and close her eyes hard like I've seen her do before.

Dad was home before we knew it, and she was still bright and alert when he came in the door. Success!

Today, I didn't get over there until about twelve thirty in the afternoon, and when I drove in, with my weekly garbage in the Jeep, to pick up their garbage and recyclable, Dad's car was out of the garage. When I went in, she was lying on the couch. She seemed a bit distressed.

"Are you okay, Mom?"

"I'm just worried about being alone."

"Do you want me to stay here until Dad gets back? I can always go to the dump later."

"No, that's okay."

"Okay, if you're sure."

So, I gathered their trash and recyclables, loaded the Jeep, said I'd be back in ten minutes, and that's what I did. When I got back, she was still on the couch, and I did their breakfast and lunch dishes, then settled into a chair with a magazine and sat with her while she napped. Dad came home about fifteen minutes later, put away his groceries, then went outside for a little walk. Mom stayed on the couch, I read some more, Dad came home, and went downstairs to look at his emails.

Mom asked me to read to her from some of magazine I was reading, "The Week," so I did, not holding back on the disturbing stories, but she didn't seem to mind hearing them. I made sure to spice the bad news blurbs up with the fluffy news pieces. Dad came up, it was four o'clock, he took his pills, Mom started getting a little restless.

We walked around the table eight times ("I can't do anymore, I need to sit down.")

She asked if it was time to start dinner, we said, no, not yet, so then she said she wanted to sing some Christmas carols. I took out the book again, and with the fire in the wood stove warming us up, we feebly sang a few carols.

Dad told Mom that one of their church friends would come to stay with her Sunday afternoon so he could go sing carols at a few nursing homes with his choir after church (and so that I could go to my weekly Sunday afternoon gig.) She accepted that, with little argument. (Though, we may have a snow storm that afternoon, so the plans are subject to change.)

About four thirty, I put on my coat to leave. Mom and Dad saw me to the door, and she thanked me for coming over. I told her I'd see her tomorrow.

Maria wasn't able to come on Wednesday for Mom's weekly bath because she was sick. She thought she might be able to come tomorrow, Friday. If not, Dad mentioned he might try and give her a bath. Mom said, "you could do that."

Mom seems to understand that Dad and I are trying to do all we can to make things comfortable for her. Though, they both mentioned that neither one of them slept very well last night...

All in all, not too much drama for the last few days, which is good for me, because I've been worried about my friend Terry who has been in recovery this last week from a liver transplant. It was touch and go for a while there, but I spoke with him tonight, and it looks like he'll be released tomorrow at noon.

Finally, a little bit of emotional relief!

Phone Calls And Soup

Today's first phone call was from Mom again, around eleven thirty in the morning.

"Hi, this is Mum. Do you still want to go to that dinner with the ladies with me tonight?"

"As long as you want to go, I will."

"Oh, okay. We have to be there at (what time is it honey?) ('five thirty') five thirty, so we have to leave at (what time?) ('five or ten minutes past five') five or ten minutes past five. Five or ten past five."

A pause. Then, "I'm feeling pretty shaky right now thinking about going."

"It's up to you Mom. If you don't want to go, we won't go. But, if you do, we will. Just try not to think about it right now, it's still many hours away. Just try to relax and enjoy the day."

"Oh, okay."

"We will talk later, and you can decide then."

Dad got on the phone and together, we confirmed that to her.  There is a chance of snow tonight, so this could seal the deal. Snow plus driving at night plus being around a bunch of chatty women = really scary and confusing for Mom.

"No pressure, Mom, no pressure. What ever you want to do."

Yesterday, sunny and not too too cold, went fairly well. Only one "disaster," when I foolishly gave her a pretty full bowl of hot soup on a tray in her chair and, naturally, the minute I turned my back, she spilled a good portion of it on her lap and sweater. She was pretty upset with herself, but somehow, miraculously, I managed to convince her to change her pants and sweater. She blamed herself, I blamed myself, we managed to put it past us.

Earlier, I got her to go out for fifteen to twenty minutes, walking around the melted driveway. She agreed to let me bring down her collection of fir trees to decorate the windows. She even helped arrange them. She was pleased with the look. Slowly, I am decorating the living room area with her Christmas decor.

She received a phone call from one of her oldest, dearest girl friends. She spoke with her for about ten minutes, early in the conversation telling her, "do you know that I have Alzheimers?" Of course, her friend knew, that is why she called, and after Mom got too antsy to talk anymore, I chatted with her for a few minutes, too. Later that night, I felt sad, thinking that that could be the last time they speak.

Later, Mom's sister called, and Mom spoke with her a bit longer, confirming their dinner engagement at her house this Saturday night. Though, who knows with the weather, it may have to get cancelled.

After lunch and the soup spilling fiasco, I read some more to her from the Wharton book. Again, she closed her eyes and lowered her head, resting her chin on a big pillow in her lap, and occasionally, she'd surprise me and blurt out and correct one of my mispronunciations.

Eventually, she wanted me to stop, so we put on HGTV for awhile until Dad got home from his doctor's appointment. I complimented her on a very busy morning, and she agreed with me.

Later, I stopped back over on my way back from grocery shopping, and gave her a little juice box sized plastic sip cup. She said she had just woken up from a nap. Sleeping is the best way to escape her frustration.

She mentioned yesterday that she was embarrassed about how she speaks. Understandable. Maybe I'm getting used to it, but it's not that bad. It's worse when she's upset, but when she is speaking of the deep past, it's not as noticeable.

It's hard for me not to think about her and her moment to moment struggles.

************
Was just about to post this when I got a call from Dad. "Hello?"

"Hi, here's Mom."

"Hi, I'm sorry, but I just can't go tonight. I'm shaking like a leaf thinking about it. I'm sorry, but I just can't go."

"That's okay, Mom. I'll be over in a little while."

"Okay, thank you, and I'm sorry."

"That's okay, Mom. Bye."

"Bye."