August 3rd, 2013 would have been mom and dad's fiftieth wedding anniversary. It landed on a beautiful Saturday during Menominee's Blessing of the Watercraft. Here are a few photos from the memorial service we held that day.

The details of mom's funeral have been finalized.

Visitation will be from 4-6:00 Friday with service to follow.

Hansen Onion Martell Funeral Home

610 Marinette Ave, Marinette, Wisconsin 54143

715.735.3737

Sadly, this is THAT post. 

Mom stopped breathing around 4:25am and her heart stopped at 4:30. She was very quiet and she still looks really good. 

I'll keep you all up to date here about funeral arrangements, we believe it will be Friday at Hansen Onion and Martell in Marinette.

Take care.

I was hesitant to leave the Walker for dinner last night because mom was trying to speak. I could not make out anything she was saying, but she did not seem agitated or scared. I asked the girls, Chris and his family to wait for me until mom was quiet again. When I got back to the Walker a few hours later, the aides and nurses said mom was trying to talk. There was a lot of fluid build up so it sounded like she was talking while gargling. A nurse asked how she was feeling and mom clearly said "okay". She continued to try to talk on and off for several hours. I slept soundly from 11:00pm to 2:00am. The night nurse said mom also tried to talk to him during that time. She's been quiet since then. The fluids have cleared from her throat, hopefully I will understand her if she tries to speak today.

I was so surprised that mom was making eye contact and talking yesterday, that I had to verify that she has not had any more fluids. 

The new hospice nurse on duty for the weekend asked for mom's entire history since the stroke and she took careful notes as I told her everything I knew. Everyone's death experience is different, but mom is clearly an unusual case. 

I began regretting this blog when we were getting more bad news than good. Now I just regret that I don't have much news to share. Mom's hospice team all agreed that it was doubtful she would make it through last weekend. Most of the signs that suggested the end was near on Thursday, May 30th, have cleared up. I haven't noticed any major changes in the past eight days. Mom is unresponsive on some days and on other days she opens her eyes every time she hears her name. The hospice nurse said today that mom looked and sounded good, seemed very comfortable and the Walker staff was doing a great job caring for her.

Christopher (Kathy's son) and his family are here this weekend. Mom opened her eyes a little for them and tried talking again this morning.

I was sure mom's last words would be "I'm done", which she said eight days ago. But on Wednesday afternoon mom woke up and her eyes looked focused for the first time in days. She said "hello" and then stayed awake talking, laughing and smiling for twenty minutes. She was weak and quiet, so I couldn't always make out what she was saying. She would smile and shrug when I couldn't understand (like she's done since the stroke when she couldn't find the right words). When she became too weak to speak, I did most of the talking and she responded appropriately.

Mom has now gone twelve days with only five ounces of fluid, and eight days with none at all. She does not swallow her medication, it is absorbed through the inside of her cheek. People who voluntarily give up eating and drinking can sometimes live for two weeks, but mom lost her ability to swallow when her body began shutting down. Most people in her condition live for only three or four days without fluids.

I have been sleeping in mom's room since Sunday and yesterday the chaplain hinted for me to leave for a while. She suggested mom might sense my presence and not want to slip away while I was in the room. I left for a few hours to run errands and visit with a friend. When I returned, mom's door was closed and this note was attached to the door frame. 

Mom is still sleeping comfortably, she looks very much like herself and her color is good. Most experts agree that dehydration brings about a natural euphoria. It has dried up most of the fluid around mom's heart and lungs, and the secretions in her throat, so she sounds good as well. She has not needed an extra bump of morphine since Sunday, she no longer gets restless.

No major changes since Friday. Mom is unable to swallow and has had no fluids since Thursday. Her breathing has slowed slightly since yesterday. She opened her eyes for a while early this morning, but again it was difficult to tell if anything registered. She is sleeping comfortably again.

Jimmer arrived in Minneapolis at noon on Friday. Mom has been mostly unresponsive since Friday morning, but may have made eye contact for short while on Saturday morning, it was difficult to tell. She's swallowed only five ounces of fluid in the past week. Hospice continues to increase her morphine and Ativan as she needs it, so she's resting comfortably. 

Mom was pretty miserable when I arrived at Walker this morning. She is relaxing now after getting morphine for pain and Ativan for anxiety. I was texting Jimmer to say I didn't know if it made sense to move mom when Nixon (the nurse manager) came in to say it was up to us, but he thought it was best if mom stayed at the Walker. The Walker team will continue to care for mom, but hospice will be on call to make sure she's comfortable.

Mom's health diminished greatly after our last meeting with the staff. She was fidgety on Sunday morning and when I asked if she needed anything she said "I don't know". She said "hi" to Gemma at dinnertime on Sunday, but she has not spoken since. She ate only 25% of her meals on Sunday and it still took over an hour to eat. She could not swallow at all Monday or Tuesday. Mom has a DNR (do not resuscitate) and her health care directive states no life saving measures, so we will not use feeding tubes. She got morphine yesterday and some anti-anxiety medication. She looked relaxed and more herself after the morphine. She will come home Thursday, rather than today, so hospice has time to get things in place.

Mom has been tired and weak and the residents of Walker have been worried about her. Margaret, another resident, took mom's hand and asked the nurse if there was anything she could do for her.  

Mom's lab results and x-rays show congestive heart failure, continued issues with her lungs and low albumin, which is protein in the blood. She continues to eat well, but her body is not absorbing the nutrients from her food. She is not bouncing back for more than a day or two before becoming weak again. 

I will take her back to our house next Wednesday for hospice care rather than rehab therapy. 

I will meet with the hospice team tomorrow or Tuesday and they will set mom up with a hospital bed, a lift and anything else she might need to remain comfortable. She rarely complains about pain, but she will also be given comfort medication in the event it becomes necessary down the road.

The doctors have been hesitant to give a prognosis, but the doctor today said she most likely has about six months before her heart just gives out. 

Mom had an appointment with her neurologist on Thursday. It was a beautiful day and she was alert and happy on the drive to and from the hospital. 

She answered all of the nurse's yes or no questions and appeared to pay attention to everything the doctor said.

The seizure activity has cleared up, but mom's medication will remain the same for now. There is still a small spot on mom's brain, near her eye, that has not cleared. She would ideally have a neuro-opthalmology exam, but while mom can answer simple questions, she is not be capable of participating in such a long and thorough exam.

We will follow up in a few weeks with Dr. Worley.

Mom walked and stood well with assistance yesterday. I am surprised she was willing to try, she was so quiet and weak at breakfast. I am hoping the weakness was nothing more serious than exhaustion from missing her Thursday afternoon nap.

Mother's Day was quiet at The Walker, there are no therapy sessions on Sundays. Piper was sick so she couldn't visit, but Gem and I brought mom some chocolates. She took one and asked "now how are we going to replace that?"

Mom is eager to get back to our house and install the bird feeder, her Mother's Day gift from Kathy. Unless there is something awesome in the mailbox today, Jimmer is feeling crappy right now.

Mom was walking with assistance again today and she's alert, sitting up straight and making sense. 

I hate to write about mom's bad days until all of her test results are in. I was convinced she would snap back again after last week, I have never seen her so weak and tired if she wasn't fighting something, but some of her team wasn't so sure. They reminded us that mom has many underlying health issues and wanted me to be prepared if she couldn't find the energy to stand and walk again. I was relieved when the x-rays showed that the pneumonia hadn't completely cleared, it explained the weakness. It looks like mom will be back to her baseline soon, which is walking with a walker and a little assistance from me, sitting, helping to transfer, and feeding herself. She is easy to care for then and I only need help from Heidi when we leave the house.

Mom was up and walking a little before she became weak again last Sunday. She was tired, confused and couldn't do much in therapy this past week. Here she is putting the ring on her head rather than the peg.

A follow up x-ray showed the pneumonia was lingering, so mom was started on another round of antibiotics. She looks and sounds much better today and she stood up for a bit. The plan is to meet with her team again in a week or two to discuss a new discharge plan. 

I'm going to miss this place.

Mom was up early working on standing, walking and language. She was doing well with simple yes or no questions when she rolled her eyes at the silliness of them. Then she said "skip." "skip." until the speech therapist moved on to the next exercise.

The staff didn't realize they dressed her in her pajamas today and she got a lot of compliments on her pretty pink outfit.

She was resting and watching television when this volunteer came around to play a game of catch with the patients. Everyone was so tired after therapy that she mostly just hit people in the face with the ball.  The ball landed on mom's lap when her eyes were closed, so she rested her head on it and used it for a pillow. When the volunteer moved on to the next person, mom said "she isn't very good at this".

Today there are 15 finches, by tomorrow there could be 20!

Not much to report, mom has been eating more and getting stronger every day. 

Aunt Jean sent mom these hydrangeas and everyone else was jealous.

Gem likes to visit because the Walker Gift Shop sells candy for less than anyone else in a five mile radius. 

I try to get the girls to visit at dinner time, it's the most entertaining place in Minneapolis. Rosie, another patient, asked me what grade mom was in. Then she asked if she could come home with me. She said there were lots of jobs she could do at our house.

I told her no way, I am taking Joe home. He offers to pay for every meal and he cleans up after everyone at his table.

Mom ate her lunch by herself today and then said she wanted to go home. It is 78° in Minneapolis today so Gemma and I took her for a walk around the neighborhood. I will meet with the therapists on Friday to discuss her progress and a discharge date.  

Mom's room overlooks a park and tennis courts where the girls spend a lot of time, it's great having her so close.

Mom was transferred to Walker Methodist Health Center yesterday for rehab. She took the fork from my hand to eat her own breakfast today, but she's still weak and tired. She will get speech, occupational and physical therapy twice a day until she is strong enough to come home. It will most likely take ten days to two weeks. The Walker is a block from our house, so the girls and I can drop by any time.

I will wait to post a photo of mom, she still has adhesive in her hair from the EEG wires. The staff said they would wash her hair tomorrow.

The large finch cage in the common area.

Mom will continue to be monitored with the EEG until the seizure activity stops completely. It's a process to get the right anti-seizure medication at the correct dosage. The video in the center of the EEG screen allows the neurologists to compare the seizure activity to mom's behavior. Right now there is no correlation, she has the seizures without any outward signs. She will stay in the hospital until Friday, maybe longer. 

Volunteers came around to hand out blankets to anyone who needed one. Mom is always cold, so they left this one with her. The silly hat is actually a headband. It is placed over the EEG wires to keep mom from picking or scratching at them, but it keeps popping off.

The MRI showed no signs of hemorrhage or tumors in mom's brain, but she has had minor seizures since the stroke. She does not have any visible symptoms while they are happening, but they could be the cause of her sleepiness. Her neurologist is trying another anti-seizure medication. Mom will stay in the hospital for a few days to make sure she tolerates it and to make sure she perks up a bit.

She was funny and had a healthy appetite today. Here she is hanging out while she gets a new air mattress. The constantly circulating air will keep her from getting bed sores.

On the advice of mom's homecare team we admitted mom to Methodist Hospital yesterday. Her therapists felt her weakness was too dramatic to be attributed to a bad day. It was also a way to move up mom's neurology tests so we wouldn't have to wait until May 16th.

She has "a little pneumonia". I am assuming we caught it early, she had no symptoms other than the weakness. Her CAT scan yesterday showed a stroke in the past six months. No stroke showed up in her records from Marinette or Green Bay, but we were sometimes told her "events" were strokes and sometimes seizures. If I remember right, the doctors and nurses didn't agree. Whether it's caused by stroke or seizure, spontaneous recovery from aphasia is unlikely if the aphasia lasts longer than two to three months. Mom recovered within days after her past events, but tomorrow will be the three month anniversary of the most recent stroke.

She is feeling better this morning and recognized me right away even without her glasses. 

I will post more after I speak with the neurologist.

Mom was getting weaker on Friday and Saturday and was quite sick by Sunday morning. She stayed in bed most of Sunday, sitting up only to eat and take meds. She had no signs of a cold or flu. Heidi and I took her to a previously scheduled appointment with Dr. Miller, a pulmonary specialist, yesterday. There are several issues with her lungs including volume loss on the left side. The loss may be caused by a blockage in the airways which provide air to the lower portion of her lung.

There is also mild to moderate fluid build-up in her lungs which is relatively new. There are many things that would cause volume loss and fluid build-up, including lung cancer. Dr Miller does not recommend invasive testing to find something we wouldn't treat. Mom is too fragile to survive surgery or chemotherapy, so we will not test for cancer. The fluid build-up could be caused by heart failure. It could be determined through a painless ultrasound and managed with medication, so we will move forward with that.

Mom also has a 4.7cm thoracic aorta aneurysm. The doctor did not seem concerned about it, even though mom was pressured to have it operated on two years ago by her Marinette doctors. Unlike an abdominal aortic aneurysm, there is no data to suggest it will burst when it reaches a specific size. The surgery to correct it is risky even for young and otherwise healthy patients. Dr Miller said no doctor would perform the surgery, which involves cracking open the chest, on mom. The aneurysm will most likely never burst.

The speech therapist does not believe mom will continue to improve. Most people with the type of brain damage that mom suffered plateau around two to three months after the injury. Mom's last seizure happened 12 weeks ago Monday. Physical therapy is waiting another week before they determine if she is continuing to improve. Once mom plateaus we will get her a fitted wheelchair that will be more comfortable for her.

We'll continue to work with mom, of course, every case is different.

She had a good night and morning, she was funny and alert and had a healthy appetite. She was surprised that she was too weak to stand now that she feels better. 

Mom's been here three weeks and we are in a quiet routine until the snow is gone and it's warm enough to go outside. The speech therapist has me help mom with simple exercises like sorting playing cards and naming family members from photos.

Here's the first exercise, which apparently was too easy for mom.

Then we tried four cards. Spoiler alert: things move slowly and it's kind of boring.

Cousin Marcia insisted we take mom out for a walk today. I was eager to try the new ramp by myself, the old one required two people.

Mom came here without a winter coat so I gave Marcia my snow shoveling coat to put on her. I blame Marcia for the rest of this look. She didn't want to make mom stand, so the coat went on backwards. Then she thought a towel made sense to keep mom's back warm.

I was embarrassed for mom, but it was good to get out. With one minor modification to the threshold, I can easily get mom in and out of the house by myself.

As I was getting mom out of bed this morning she said "You're such a good girl, I could kiss you!".  I thought I was doing an exceptional job, but in the next breath she talked about the ferrets (there are no ferrets).

I ask mom every day if she's hungry for something special or if there's anything I can get for her at the store. She never asks for anything, she says whatever we're having is fine. 

She was watching shows on the laptop this morning while I was loading the dishwasher. I came back in at a commercial break and mom told me she just saw something she'd like to try. I rewound the video and found the dish she wanted.

It was Crispy Pig Ear & Chicory Salad, Six-Minute Egg, Apricot Jam & Candied Kumquats from the Top Chef finale!

Maybe I'll give her the egg and jam.

Marcia and her family are in town for a visit. Marcia wore mom out and she ended up taking a three hour nap. She woke at 4:00 and wanted to go to back to bed at 6:00pm. 

She ate dinner with me and my friend Sara even though she insisted she wasn't going to eat, she was going straight to bed. I promised her she could go to bed at 7:00. After dinner she asked what time it was. I told her it was 7:05 and she said "you lied".

Mom is having a great day. She slept through the night and was up early. She's alert and chatty and paying better attention to the documentaries she likes to watch. She's still aware that her words are not coming out correctly and she continues to ask "isn't that silly?". I bookmarked a handful of online picture dictionaries that I hoped might help her when she cannot find the right words. I'm sure I will get some tips on how to help her from the speech therapist on Monday.

I found mom's rings in her wallet. She is happy to be wearing them again. 

Yesterday mom did not want to get out of bed. She was weak on her right side and could not walk. She was a little better after her nap. The aide, Meme, came to bathe her at 2:00. Meme is 22 and came here from from a small village in Tibet six years ago. She had never been to school and did not speak English when she was placed in high school here. I told mom she needed to be strong and cooperate because Meme couldn't weigh more than ninety pounds. She said every time she meets a new client they are sure she cannot help them because she is so tiny. But she did a great job and really liked mom. She said most of her clients are crabby. Mom knows how to turn on the charm when anyone comes to help.

Today mom couldn't wait to get out of bed. On bad days I have her stand and immediately sit in her wheelchair. Today she walked to the breakfast table and then to and from the bathroom with her walker and very little support from me. Her days are so routine that it's difficult to figure out why she is strong some days and not others. I think I will leave her to rest on days when she does not want to get out of bed. It might be something as simple as the amount of sleep she's getting.

The occupational therapist comes today and the speech therapist comes next week. Mom was very aware of her aphasia today. She laughed when her words didn't come out right, and kept repeating how silly it was. She said "earlier we were talking and talking and then it all just stopped." She asked if it would get better and I reminded her that she's had three seizures and quickly snapped out of the other two.

The better mom feels, the spicier she gets.

We argued for ten minutes over why she couldn't eat this clip. 

She insisted it was her favorite and I "didn't have to enforce her". She said I was making fun of her when I laughed.

She won in the end.

Then I made a peanut butter banana smoothie and she remembered THAT was her favorite.

I have been waking up at four every morning since mom moved in, it's like having a new baby. Today I fell back to sleep until 8:30. When I checked on mom, her blankets were off and she said she was ready to go outside. I wheeled her up to the table and went to the kitchen to prepare her breakfast. Gemma was at the table eating cereal and mom reached over, grabbed gemma's spoon and stuck it in her own mouth! 

I'm bummed now that I didn't think to take a picture.

The physical therapist came today and mom did great. She is using her right hand to scratch an itch or help pull herself up to her walker. When I brushed mom's teeth, her right hand followed along, going through all the motions of brushing her own teeth, just inches from her mouth. There is still enough tone left that the therapist is confident mom will regain more strength and control in her right side.

Kathy and her family visited and again I forgot to take photos. Mom was alert and chatty for most of the visit and she busted me for failing to understand how much chocolate she requires.

Mom hates exercising, but she's pushing herself to impress the physical therapist who will come later this week.

RESULTS ARE IN

Lydia called with the results of the blood work and lung x-rays. 

The seven liver tests came back showing no damage to mom's liver. The mass in her lungs was a collapse with a little fluid, nothing concerning.

We will keep the appointment with the pulmonary specialist on April 16th as a precaution.

Right now we have no explanation for mom's confusion. Her oxygen does dip quite low sometimes. The oxygen should be here any minute, we'll get her back on it tonight and find out if that helps.

Mom will follow up with Lydia in three or four weeks and has an appointment with a neurologist on May 16th.

Mom stayed in bed most of yesterday and ate very little other than her Ensure. Today it was her idea to get up and she didn't get back in bed until 7:45pm. 

I was feeding mom her breakfast because I wasn't sure if she was strong enough. I turned my attention to the laptop for a minute and she grabbed the spoon to feed herself. 

She went back to the doctor today for blood work and x-rays of her lungs. Her doctor reviewed her medical records and it turns out she did not have a stroke. It was a seizure which caused the right sided weakness.

She was taken off medication that was given to her to flush ammonia from her body. It's a harsh medicine that can cause a host of other problems. It was originally believed the extra ammonia was due to liver damage, but it turns out that one of the medications given to her after the seizure caused some kidney damage. The damage was temporary so the medication is no longer needed.

The biggest concern now is a mass on mom's lungs. I will post the results of the lung x-rays when we hear from the doctor. We will give mom oxygen at night and Albuterol nebs to strengthen her lungs.

Mom was quiet today, but there was very little gibberish. She understood most of what was said to her and even when she appeared to be dozing off in her chair, she laughed at our jokes. 

Lots of mmmmm mmmmm mmmmm when I tucked her into bed.

BETTER

It was mom's idea to sit up and get out of bed this morning. She ate a good breakfast and is drinking a lot of juice and water. Heidi washed her hair, clipped her nails, and gave her a sponge bath.

She looks and feels much better than she did yesterday.

ELEVEN

I took a freelance job last summer designing greeting cards for a new Martha Stewart line. The art director explained that Martha's copywriters would later write the actual greetings, but I should write placeholder copy so they would have an idea of the general sentiment I envisioned. Then she said "Martha is a two on the sentiment scale, don't write anything too mushy". I had no idea there was such a thing as a sentiment scale, but I told her it was perfect because I am also a two on the sentiment scale! I don't like anything mushy or overly sentimental and I have no bedside manner. I like science. This is why nobody took me seriously when I said I would take mom home to live with me. Kathy ignored my initial email, thinking I was drunk. Jimmer thought it was hilarious and everyone else thought I was joking.

But my friend Heidi is an eleven on the scale. And elevens make good caregivers. Heidi worked for years in a state hospital and group homes and she is helping me until we figure out how much and what type of care mom needs.

Yesterday I was ready to fire Heidi, mom was so easy to care for. Today was Heidi's first day and I couldn't have done it alone. Mom had a rough morning. She wanted to stay in bed, refused to eat, and complained of pain for the first time.

I think she's coming down with a cold, her nose was runny and she had the chills. She also slept so much yesterday that she didn't get enough fluids.

Heidi helped me get mom to her appointment with her new doctor this morning. We all instantly liked her. She lined us up with some in-home assistance, physical therapists and a social worker. She will review all of mom's medical records and call on Wednesday to discuss a plan.

Mom woke from her afternoon nap hungry, thirsty and with clearer thinking. She ate, drank a lot and took all of her medication before going to bed at 7:00.  I am confident she will feel better tomorrow.

Mom wasn't very photogenic in the crazy outfit we dressed her in to keep her warm today, so here's another shot with Wren. He still insists on getting up to peek at mom every time she gets into bed.

QUIET DAY

Mom was tired after refusing to nap in the car yesterday (she had to "keep an eye on things to see how they were going"). She napped for a long time this afternoon and was very easy to care for. She has learned her routine and the layout of the house. She does everything slowly except walk, when she gets on her walker it's difficult to keep up with her. My plan for tomorrow is to have mom use her wheelchair only while she's sitting to eat, and have her use the walker to travel. She sits and stands well and today she rolled onto to her side for her nap.

I asked mom if she could brush her own teeth and she said she would try. Then she stuck her toothbrush in her nose. I brushed her teeth for her and she asked me to brush them again, she was certain I had brushed only one side. The right side of her body is weak from the stroke, I'm assuming she couldn't feel anything on that side of her mouth.

Wren and mom played fetch with wren's tennis ball this morning. Mom tired of it before Wren did, of course.

THE ENFORCER

I arrived at the Luther Home on Friday at 1:00. Mom teared up when she saw me and said she couldn't believe I came all that way to take her home. She kept repeating how wonderful it was and promised more than once that she wouldn't be a pest.

We got on the road back to Minneapolis around 11:00 this morning. Mom was alert and chatty, but most of what she said did not make sense. Then she said "that truck is doing something wrong". Sure enough, she noticed a truck, 75 yards in front of us, make an illegal u-turn! "I knew he was doing something wrong" she repeated as we passed the truck.

I asked mom several times if she was hungry or needed a snack. She assured me she was fine. I asked again around 12:30 and she said "whatever. If you're hungry. It doesn't matter". She's so concerned that she will be a burden, I get that this is how she says "yes". 

About four hours into the trip mom asked about the time. I apologized for the long ride and mom said "it takes so long and the tv show just does the same thing over and over (she was watching the GPS screen)!"

From St Paul to Minneapolis there are quite a few lane changes and merges. Mom accused me of "just going back and forth, side to side".

Gemma was a great help getting mom from the car to her wheelchair, up the ramp, and into the house.

I left mom in her wheelchair in the living room to rest for a while. She released the brakes several times and I put them back on. She finally made it clear it was intentional, she wanted a tour of the house. She loves her room, she kept saying it was cute and perfect.

At dinner she tried to convince me she had taken all of her meds for the day. I explained she had to take four more and I crushed them into pudding like the staff did at the nursing home. She ate it in four bites, making faces after each bite. She said "try not to put that together again!".

Mom let me know when she was ready for bed and when I got her tucked in she pulled the covers all the way up and said "oooooh, kelly!" Wren cried and cried to get on the bed with her. She laughed hard and then was concerned that I would leave him up there. She didn't want that turkey in her room after I left.

I installed a security camera so I can monitor mom from any phone or computer. Here it is in night-vision mode.












It was a long day, but mom was great. Tomorrow we'll rest and get organized.

Good night.

here we go!

my plan is to bring mom to minneapolis on march 23 where i, with the help of in-home aides, will care for her in my home.

i will keep you updated here.