some insight into why Mom can't swallow

Yesterday I spoke with Theresa, the hospice nurse, and she said she and Pat, the other nurse, spoke with all the nurses and therapists at the nursing home, and they are feeling that Mom must have had an "event" (i.e. a small stroke, perhaps) which has caused her to not be able to swallow well, and usually now she cannot swallow at all. Heather, one of the physical therapists, commented that before Mom went to the hospital for her blood clot in her leg in September, she noticed one day as Mom was sitting in the activity room, that her face looked like it was drooping. She is thinking back to that observation and they are trying to put the pieces together. Theresa has examined Mom's mouth and does not find anything that would be blocking her swallowing. We try pressing on the front of Mom's throat to get a swallowing reflex, and usually nothing happens.

phone call today

One more little thing before the night is over--today on our drive home, I called the nursing home to see how Mom was doing. Her nurse said Mom was doing okay and had a visitor, and she took the phone in to Mom!
Steve Young was visiting. He handed the phone to Mom and she wanted to know how the travelers did. She is always concerned about others. I reminded her of several people who have sent greetings, and she enjoyed hearing that. Steve got on the line and said it was really hard seeing Mom like that. It was good to hear her voice on the phone, though, and to know that she is still thinking somewhat clearly.

I did not call the nursing home tonight, but we are regrouping from our trip and spending time together as a family. Part of our time these days involves planning a fitting tribute and memorial service. I am looking through my files and see notes from three years ago when Mom was going to die "in two weeks". Sigh. She had more work to do, obviously!

"Only one life will soon be past,
Only what's done for Christ will last"

We are safely home, thinking of Mom who will be HOME soon.

Hello from a very sleepy one here! We got up at 3 AM to get the girls (Lizzie, baby Emma and Lizzie's sister-in-law Sarah) to SFO for their 6 AM flight back to Indianapolis, and all went well. 8 month old Emma was all smiles at 3:30, breakfast in tummy, getting her cute clothes on ("the other passengers will look more kindly on us in case she's noisy, if she is cute!", said Mommy Liz). The girls got to the airport with lots of time to spare and then Ben, Julia and I went back to the Pattersons' house to pack our car and head for home for a few days.

Last evening was HARD. It was HARD seeing Lizzie try to say goodbye to her dear Gramma, and it was even harder because Gramma was miserable and becoming more needy by the moment. It was NOT a good good-bye, and we all left in tears.

But, we pray that the memories that remain will be those that are pure, honorable, uplifting, hopeful and full of joy. Because, all of those qualities and more embodied the relationship that Lizzie had with her Gramma Moose.

The time spent with Mom from Wednesday till yesterday has been measured in large part by Mom's marked decline day to day. Yesterday (Monday), we spent time outdoors with Mom, as she was in her wheelchair when we arrived and she wanted to go outdoors to enjoy the gorgeous warm fall weather (80 degrees--what an amazingly perfect November day to be out of doors!)
Dear friend Colleen and her little girl Hannah arrived and added much joy to the day. Mom, however, was just miserable as her main desire was to try to get some nourishment which frustratingly, would not stay in her mouth again. So many tears. What to do? Perhaps we should just start swabbing her mouth with cool water on a sponge now? But, sometimes a little liquid does go down, so no one gives up trying.

Some may wonder: why no feeding tube? She is starving! Indeed, we are realizing how awful this is and it is the hardest thing to watch. But, just to let everyone know how things have transpired in the decision making, Mom's hospice nurse Theresa reminded me that even though Mom did sign an advance care directive many years ago when she was struggling with cancer, and in the paper Mom said she did not want life support, Theresa said that a patient who is still in their right mind has every right to change their mind about such things. For this reason, Theresa took it upon herself on three separate occasions to approach Mom, in the presence of the other hospice nurse, and ask her the hard question: "Gene, do you want a feeding tube?" She explained it several different ways so Mom would fully understand what would be involved. Brave, dear Mom answered clearly the same way each time, without hesitation and without regret, that she did not want a feeding tube. But Theresa said she felt duty bound to ask. Oh how I am thankful for that. This has been very very hard. On the drive home today, my stomach was growling because it was time for a snack. I will never have a growling tummy again without thinking of Mom.

There were some good parts to our visit yesterday (just a few sandwiched in): When we went in to see Gramma in the evening, Gramma was lying on her bed resting quietly and peacefully. She brightened immediately upon seeing baby Emma smiling at her, and thankfully we got some precious photos of those few moments.
































Just a few minutes later, however, Gramma started feeling distressed and began gasping for breath, almost wheezing and then began trying to reach her left hand across her body and grab the bed rail on the other side, again and again. It was like she was not able to control what she was doing, and it was really disturbing to see her in distress. She was beginning to cry out in discomfort and it all seemed like a bad dream, since just minutes earlier we had been all smiles. What was going on? Liz suggested I go get the charge nurse, and I went to get him, but he had just seen Gramma
smiling with the baby so he thought medication would not be necessary just yet. Pretty soon we both heard Gramma crying out from way down the hall, and here came Lizzie in tears--"come!!" So he came and saw the terrible distress that had suddenly come over Mom. There was a CNA who was attending to Mom's roommate and she just came over and gave me a big hug and said "I'm sorry". We are all so sad for Mom. Of course the nurse immediately got some morphine and put it at the back of Mom's mouth, and we held her lips closed so it would stay in. I massaged Mom's face with a cool damp cloth, as Kathy showed me that this is something that provides relief for Mom's tight, painful skin. I also rubbed her back with it and her neck. Mom was not feeling better at all, and even though Lizzie and I stayed for about another 20 minutes, there was not much relief in Mom's discomfort and agitation. This was basically how Lizzie last saw her Gramma and we are praying that the Lord will cover over the memories and bring only the good ones back to mind.

When I got in the car to take all the kids back to Sunnyvale to pack and get to bed, we received a sweet phone call from Mom's dear friend Pat, saying that Mom's long-time friend Sharon is flying out from Pennsylvania on Wednesday evening to see Mom. Oh, joy!!! We PRAY that this will be a GOOD time. I immediately went back in to the nursing home to tell Mom the wonderful news. She sure did light up, even though still struggling physically. We pray that this upcoming visit will give Mom something to hope for and look forward to.

Kathy said that she arrived at the nursing home just after we left, and found Mom resting well. Praise God! She shared, however, that after about one hour, the agitation and distress that I described all started up again. The nurse administered morphine again at the sign of distress, and Mom was more calm.

Thank you everyone for taking time to read this and to pray.

Sunday

We went to see Mom yesterday afternoon, and she has definitely taken a turn towards the Homeward stretch. It was so nice to see Kathy and also Marta Zapp with Mom. Such dear friends. We felt rather helpless yesterday to do anything for Mom except keep going to the nurse on her behalf. Although we were able to help her sip a little bit of liquids, Mom also needed morphine for the pain that is wracking her body. At some points during the evening, Mom kept clutching at her chest and also patting at her abdomen to show us where the discomfort was. She cried out in discomfort. More morphine was given later, this time with a different kind of applicator that got it farther back in her throat. Mom finally was resting peacefully around 7 PM and I felt it was okay to leave.

Kathy often goes later in the evening to check on Mom, even after 9 PM, and she tries to comfort as well.

Mom has many people who love her in the nursing home also. Last night the cleaning and laundry man, David, was so kind to bring Mom a nice hot towel straight from the dryer when I went searching for something warm to put on Mom's tummy to kind of provide some temporary relief for her. He said, "She is my friend." He said he goes and sits with her occasionally. I noticed he kept looking in to her room as he passed by, and has a look of love on his face.

Tita, the charge nurse, also decided to give Mom something for her anxiety. Sometimes Mom is calm and peaceful, but then all of a sudden she grasps her chest and pulls at her gown and cries out in desperation. She grabs for my hand and will not let go. I squeeze her hand three times, "I love you", and she squeezes back three times. Tita suggested that she should call hospice and they would be coming more frequently. Tita said she thinks Mom "is getting really close".

During the time periods when Mom was calmer, we were able to read some Psalms to her, and we also sang hymns and whenever we sang, it seemed to calm Mom more, and she nodded her head to the music. Music is such a gift and the hymns that Mom loves are a true balm and comfort to her at this time.

Please, if anyone goes to visit her, if she is up to it, feel free to grab her hymnal and sing to her, even if you feel you are not a good singer, sing a hymn if you wish!

Also, the nursing home told us that they are now open late at night for loving friends and family, so if you feel the Lord laying it on your heart to stop in and sit and pray and encourage, please do so (within reason), until further notice.

with love and gratitude,
Jane

Saturday

Our whole family was able to be together! What a wonderful gift! Tim drove over after work on Friday, and Anna and Daniel drove over separately. We all stayed at our friend Kelsey Patterson's house and had a big slumber party. Louise made a delicious supper on Friday evening and we had fun together.

On Saturday all of us Jacobsens went up to Redwood City to see Gramma Moose. She was glad to see everyone, but her joy was diminished by the utter frustration of being so miserable with her hunger and not being able to swallow anything that she tried to drink. She wanted to sit with everyone outdoors in the lovely, warm fall weather under the patio umbrella, and we were happy to see her friend Bea Mo who came for a visit, but all of us felt like we were suffering right along with Mom as we saw her struggles in her helpless condition. We went and got the hymnal out of Mom's room, and Tim led us in several old hymns. Mom nodded along with the music and that was nice. The visit was hard for the children, to see their Gramma so miserable. Mom eventually asked to go back to her bed, where her helpers got the oxygen for her and got her more comfortable. We then took turns just sitting with Gramma in her room while the rest of the family visited outdoors. Big sigh. It was a hard day. Little Emma Grace brought much joy with her giggles and smiles and learning to crawl on a big blanket, and she also enjoyed trying to "drive" Grampa Tim's big white truck. I'll post photos when we get home!

Tim had to get back home to finish the alfalfa planting, so he left in the early evening. Anna and Daniel left also for the evening to go to our friend Matt's house for a party, and the rest of us stayed at the nursing home for a while.

The nurse brought the Nystatin and painted the back of Mom's throat, a few minutes before 5:00 PM. Mom was brave and even though it all started to drip down her chin, I encouraged her to close her lips and keep it all in. I lifted her chin and we tried to get it to the back of her throat. I told her it needs to go down her throat to help the infection. The nurses have said that Mom's thrush infection is pretty much cleared up, but if they are continuing to treat it, the medicine really needs to go down her throat if possible to help with any infection that is down there, at least that is what I understand! (My apologies if what I write is not completely medically accurate; I am writing my observations as I just watch and ask questions.)

At shortly after 5 PM, the CNA brought Mom's dinner tray. Mom was not interested in her pureed foods. She unwrapped the top of her orange juice glass, however, and started drinking! I watched her throat and saw that she was really swallowing it! I left for a few minutes and when I came back, the glass was only 1/4 full, and Mom had not dribbled any on the front of her, completely unlike what has been happening since Wednesday. She had a smile in her eyes and we worked on getting some Ensure into her, as well as some water and a little milk. We counted up how many ounces we think went in, and it was about 9 ounces in one hour. Mom seemed tired then and we got ready to leave around 6 PM. It was so nice to see Mom not frustrated.

I think that in the past few days and weeks, there must also have been some times when Mom has been able to swallow. She is maintaining some strength, even while she is most assuredly declining.

Well, that is all for now. We were thankful that the children could say goodbye to Gramma last evening while she was relatively cheerful and not too frustrated.

Thank you again for praying!

Friday

Friday morning brought a wonderful surprise--my cousin Lynne, who works for Delta airlines in TX, was able to hop on a standby flight and came out to see Mom! I returned her cell phone call mid-morning and said, "Where are you?" "I'm sitting here with your mom!", she replied. What?? Wow--I knew she was trying to come, and I was preparing to go get her at SFO airport! She is one amazing gal with her GPS. But, what else should we expect from the wife of an Air Force pilot? We are blessed with the most loving relatives and friends. Lynne was able to stay for a few hours and it was a good closure time for her with her Aunt Gene. Living so far away, she has not had the chance to learn Mom's "stroke language", so she communicated the best she could, with creativity and love.


Here is a picture of Lynne with Lizzie and Emma in the parking lot.














Mom was feeling strong enough to go outdoors, and it was a lovely sunny day. She always asks to go outside. She tries so hard. We took the lovely bouquet of garden flowers that Nan had brought, outdoors to grace our table. Friend Marge Perry came, and then Brad, Colleen and Hannah Mortensen. We got Mom's hymnal out of her room and had some hymn singing time around the table. Mom enjoyed listening, and nodded along to the old familiar words. She loves hymns. She has memorized probably a hundred, I imagine. I just wonder what is going on in her mind while she is alone. So many people are praying for Mom, and we know the Lord is caring for her. One friend wrote, "May she continually sense the precious companionship of the Holy Spirit, the comfort of the Lord's loving arms around her, and the nourishment He provides in her current limitations to take in what her body craves. May He feed her the manna, milk and meat of Heaven, and quench her thirst with His Springs of Living Water. What a feast she has to look forward to, in sitting down to truly dine with the Master when He invites her to eat at His table daily."

Mom wanted to eat while we were outdoors, so we tried the Ensure strawberry beverage, but that all dribbled out. So, we focused our attention on comforting Mom with singing and visiting. Mom asked to go lie down on her bed after a short while, so Colleen went in with her, and then Brad came in to pray with her.

Mom's nurse put the oxygen on her, and Mom began resting more peacefully, reclined on her bed. We all just went and visited her one or two at a time for the rest of the afternoon, sitting by her bedside while she closed her eyes with a slight smile on her face. When little Hannah came to say goodbye to "Gramma Gene", Mom had a cute little expression when she was gazing at sweet Hannah. The visits from little people and loving friends are REALLY encouraging to Mom.

We stayed until 5 PM and then prayed with Mom and bid her goodbye for the evening. I took several photos of her looking so sweet and peaceful in her bed. I told her that Keith has offered to bring in a headset with Scripture playing for her to listen, and she smiled with her sweet look and nodded that she would really like that.

The hospice nurses have asked the Physical Therapy dept. to do a swallowing evaluation on Mom to see if they can determine any more about why Mom cannot swallow. One theory I keep hearing is that Mom MAY have had another little stroke, which may have made it impossible for her to swallow. The lack of tongue movement may have even caused or worsened the thrush condition which is being treated, but without swallowing there can really be no more nourishment.

Kathy has been sitting with Mom in the evening times, and a few days ago when she worked with Mom for two hours, she was able to help Mom swallow little tiny sips and spoons of juice. Mom actually swallowed about a half of a little glass of juice that evening, sip by sip, with pauses in between. Yesterday we did not have as much success as Kathy did.

Here are some more photos from the day:

Mom with dear friend Marge as we sat outdoors visiting. Mom's smile is weak but she was so glad to be with friends and family.













Gramma with Lizzie and Emma











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Brad, Colleen and Hannah with Mom in her room


















Here is Mom looking up at Colleen and Hannah with a sweet expression

Thursday

Thursday was a long day. I have told people that when I am at home, I feel like floating, buoyed up by prayer, as I think about Mom and her exciting times ahead, when she will be finally safe at Home. What will Heaven be like for her? She will be freed from all her pain, all her tears, and she will be safe with her Savior. I have felt at times as if we, her family and friends, are cheering her on, getting her ready for this wonderful journey.

But when we are with her, it is all different.

Yesterday was bittersweet. There were a few times when we caught Mom smiling, as she gazed upon her great-granddaughter Emma Grace, and as she enjoyed seeing us bring out her old hats that she used to wear back in the '60s, and as we tried to cheer her up with photos and stories.

But, mostly the day was really really hard as we see Mom suffer. Her skin tone is pinker, but Lizzie noticed that it seems like Gramma's thin skin is almost in pain, from being so dehydrated. Kathy has been putting a cool moist paper towel on Mom's cheek and on her neck, and that is really comforting to Mom.

Mom was not on oxygen yesterday, and she wanted to go outside. So we sat outdoors under the patio umbrellas and visited. She is so hungry. She wants so much to eat. We spent all day trying to get little bits of ice cream to stay in her mouth. Just when we thought we were successful, all the little tiny bits of ice cream that we thought may have gone down the back of her throat all came puddling towards the front and then we had to clean out her mouth. Again. Tears of frustration. Chocolate ice cream mixed with tears. Our hearts break, and I hug my mother. "You have done SUCH a good job, Mom. I love you!!!" "I love you too", she sobs. She puts her hand to her forehead and just cries in frustration.