Note from Barb S

Hi everyone, Pete and I just got home from seeing your mom. This afternoon, Jean, Diane(hospice volunteer) and I took Cathy to the dinning room to listen to a couple sing and a drummer. Cathy ate a pudding cup and a dish of yogurt. Not her usual smiles or tapping feet to the music. Then Jean and I stayed awhile and Shelly was doing Karaoke back in the unit, so we joined with your mom. I can see why she smiled then, she probably wanted to laugh at us. The 3 of us singing, but we sure had fun. Then Jean left and I and Cathy even danced to Shake-RattleNRoll. She did great! No wonder she was tired tonight. When we got there tonight she was in the T.V. room, but went back to the supper table and ate more for me, so that was good. She wanted to go to bed about 6:20 so we took another friend of ours that is up by Cathy now and we went to Pub Night. When we got back up there your mom was back in the T.V. room. The nurse said she was coughing so they told her to get up and she got out of bed and went to watch T.V. We sat with her until the coughing cleared. She was happy to see Pete and just smiled and held his hand. I'll go up a couple times tomorrow also to check on things. Love to you all! We're here for you if any of you need to talk. I know how hard it must be for you Toby being so far away. Love, Barb

update from Brad

I just talked to Brad and he said she is better than yesterday. She only ate about 25% of her breakfast and is struggling with eating... She didn't greet him with the usual smiles. He said she just looked at him, in a way she has not before. What is she trying to express to him? Pain, fear, tiredness, acceptance, sadness.... if only we knew exactly. She kept leaning into his shoulder. When they sat on the edge of the bed she leaned her head into his shoulder. When he walked with her to see the birds she leaned in towards his shoulder as well. And she headed for the door today, he tried to distract her, but she kept going for the door again. Cathy always loved the outdoors, I can only imagine she needs to get out & get some fresh air.

She had lots of visitors this morning... Jean, Barb S, Jackie, Barb H, Brad, & Gayle (he has been going a lot every day).

Again she is a bit better... but not as well. It is so hard watching all of this happen... with a helpless feeling & no hope for the future.

One Year

One year ago today we moved Cathy into the Nursing Home...

Another Downturn...

The last 24 hours have been difficult for Cathy. Something happened last evening... she most likely aspirated something. We are not sure if it is the stomach flu, something she ate, or just phlegm... but she is not doing good. They had to use a wheelchair to get her back to her room after supper (dinner for those of you on the west coast). Whatever it was that happened really scared the nurse. Today I got a call from Brad & Gayle to let us know what was going on & I then called Jean & the NH staff to see what they thought... did the kids & I need to head over? Hospice discussed a few options with Gayle & Toby about medications... antibiotics, etc. Tough decisions for them. Whatever they decide I am behind them 100%. I know they Love Cathy & that they will do what they feel is best for her, I cannot imagine having the weight of that decision on my shoulders.

Talked to Jean again this afternoon. (She braved the risk of getting the stomach flu to see her friend!) She said Cathy kept reaching for her hand to hold & she just stroked it. Cathy also looked at her with eyes seeming to say to her, "Help me." ((((sigh)))) As of this afternoon she had not been able to eat or drink anything & she was beginning to run a fever.

The one constant comfort we have had with this disease is that Cathy has not been in any pain, but now... we are not sure. Watching her eat she looks uncomfortable & she struggles. She has no way of telling us she is in pain. Her vitals are stable. It is hard to say. I hope & pray that after all her suffering that she will not have to endure pain as well.

Later this evening Jackie went to visit. Cath was able to walk down the hall with her to see the birds... but she was not very stable on her feet.

I just talked to the night nurse (I don't normally call & bug them... but I needed some news tonight) & she said Cathy was sleeping. She felt she was doing better & that after Tylenol her fever was gone.

It is hard to say what the next 24 hours will hold... this disease is SO unpredictable!! In the past Cathy will have a bad day & then rebound the next. But each time she seems to come back weaker. And after talking to the people that care for her & are with her every day... the general consensus is that the time is drawing nearer... (I just can't find the right words for this... nor do I want to type the end. It is hard enough to post now with such little good news or something to laugh about.)

So... we are waiting til morning to see if we should head over or not. I have never wanted to predict the future, I am a firm believer in God has a plan & we are to trust in it... but it would be a great comfort to know when we should be there with her, in the end. I know everyone reading this has had this experience. For me it was losing my Grandfather... he was in the Hospital & my Grandmother did not want to leave him, we talked her into going home for a quick shower. I took her while my Mom & my Aunts stayed with Grandpa. As we walked off the elevator on our return to his floor they were standing there crying... he had just passed away. Grandma was devastated, she had been there by his side for months, and was not in the end. Looking back I remember just as we were leaving her house to return a family friend stopped by for a short visit, I truly think that God sent him to delay us, that Grandpa didn't want her there at the time of his passing. Just my thoughts...

Swallowing...

Swallowing still seems to be the biggest change/challenge for Cathy. She seems to be more comfortable with certain people feeding her. On Monday there was a meeting with the NH, Hospice, & Gayle to discuss what would be best for Cathy. The bottom line is that we all need to work together to "Care for Cathy" & I believe that everyone is doing the best with the knowledge they have. It sounds like breakfast & lunch will go back to NH staff & snack time will go to Hospice. Let me say that there is alot of 'Emotion' with this issue for all involved... the NH staff has become attached to Cathy while caring for her the past year & they are now familiar with her disease, Hospice having just came on to help is just beginning to understand the disease & get to know Cathy, & Gayle is just wanting what is best for Cathy. It is frustrating for me being 2 hours away... wanting to help and not being able to... Quite honestly I worry about Gayle & his health. He is under so much stress with worrying about Cathy's care, dealing with Cathy's illness, still keeping up his full time job, running a personal business, & dealing with day to day life. Gayle would say 'not to worry'... but we do!

The kids & I spent last weekend there again. I didn't take the kids over to see Grandma since the stomach flu has been going through the NH (and I couldn't imagine the kids walking down the 2 long hallways without touching anything...). I went over both days and spent some time with her. On Saturday I missed Hospice by just a few minutes, it was noon & Cathy was asleep in bed. She had not been sleeping well at night & had not eaten much for dinner that day. So I headed over to KFC & got her some good ol' mashed potatoes & gravy and some pudding from Barb H. and took it back for Cathy. When I got back she was so tired that she only opened her eyes briefly and didn't even focus on me. Usually she looks at you and smiles & then closes her eyes again. So I pulled up a chair and sat next to her, stroking her hair as she slept. (And watching the movie Fly Away Home) After about 20 minutes she opened her eyes and smiled at me, sat up, & looked over at the KFC sack. :) She ate all of the pudding & about 1/3 of the mashed potatoes. (It is awkward even for me to feed her now, since I am not there on a daily basis I was asking the staff to help me out with what works best for her.)

After her snack she got restless & one of the CNA's told me that sometimes means she needs to use the restroom. So I took her to her room and she laid down. I stood in the bathroom smiling at her & she got up and came in to use the bathroom. Once again she does not have the strength/use of her hands to pull down or up her clothing. I also noticed that she was wearing some type of depends underwear instead of actual underwear like last week. And then trying to get her to wash her hands was a challenge again! I would turn the water on and she would reach over and turn it off... we did that a few times until I just stood behind her and helped her wash them. It made me think about when she was helping me potty train our son Chase... and of course that made me cry. Here I am helping her go to the bathroom and wash her hands now, at the age of 54.

Jean is in town from Florida to spend some time with her family & Cathy... but due to the stomach flu at the NH she is unable to visit. It is heartbreaking knowing that she is here but can't see her! But we don't want to see her get sick either & take it home to her family. I am hoping by the end of the week Jean will be able to spend at least a day with Cathy. For Cathy & Jean's sake!!

Changes again

Honestly I have been both anxious & nervous to go visit Cathy since her bad day last week. I was afraid to see her worse... yet wanting to just 'be' around her. The kiddos & I went over this weekend and I did notice a few changes... one for the better, the rest for the worse... I am Thankful for at least one small glimpse of 'better' in the middle of all this.

Better: it seems that she is more 'alert' (for lack of a better word). Her eyes at times seem to have that old sparkle back. Most likely this is due to the change in her meds. (I think they took her off the Seroquel & lowered the dosages of the rest of her meds...) She is less 'blah' & her eyes do not seem as distant. I realized while sitting with her in the main dining room Saturday that she reacts differently to the people she knows vs. the people she does not. (I knew this in the past, but have been worried things were changing for the worse) People would walk in that she didn't know & she had no reaction. But when a family friend walked in she was all smiles & later when Gayle walked in she was all smiles again! I also asked her if her Buddy John had visited her... and she turned her head towards me slowly with a huge grin on her face!!!! John had visited on Friday & she remembered! Her eyes glowed & she was grinning from ear to ear! - Today I talked to Brad and he said this morning she greeted him with a big smile & actually got up and came walking towards him! (She does not always have the strength to get up on her own anymore... it just depends on the time of day & the day in itself.)

Worse: Swallowing, Mobility, & Weakness... Barb & I were there for snack time both days. I was Thankful when we got there on Sunday that Barb was feeding her... both the kids had alot of questions. (And it was at that point that I realized I cannot take the kids at eating times again! More to follow below.) Barb mentioned that Hospice was having a meeting today about feeding, some of the girls are uncomfortable feeding her & they were going to help them out. There is a BIG change in her swallowing/feeding in just 2 weeks. 2 weeks ago she could feed herself with help on and off but Sunday she could barely lift her spoon. As she lifted her 'baby' spoon up she would lean forward with her mouth open... like a baby bird... and she could not get her mouth & the spoon to meet sometimes. Barb would have to help with each bite. In fact Barb fed her most bites. Strangely she could grasp her 'thickened' chocolate milk glass & attempt to drink it (it seems that she is very thirsty and she wants to gulp it down). With almost every bite she would gag... most likely aspirating. She used to be able to cough at this point, and then when she could no longer cough she would make a coughing sound, but now she can only open her mouth & gag. It is awful to watch. She turns slightly red, her eyes water, her mouth is open, & she gags.... she aspirates. (When a person aspirates their lungs can usually remove the foreign object and carry it out of the body... as long as Cathy is active she will have a better chance of her body doing this, but once she is no longer active these foreign objects will lead to infection...and that is one of the main causes of death with this disease) To be quite honest it is both scary & heartbreaking to see. Barb is so good with her... patiently helping her eat, holding her chin up, talking to her softly...

I also noticed her walking. As we walked down to the main dining room Saturday I thought... this is different... she is looking down at her feet, her shoulders are slightly slumped over, her speed is slower, & her knees seem to be lifting higher, like she is working harder for each step. (We used to say how she would walk like she was 'on a mission'... just take off with or without you looking straight ahead) And then Saturday night we went Ice Skating & it hit me... (it was only my 2nd time on skates, thanks to the schmidts for letting me borrow skates, or maybe not... LOL... it was Mia's first time & she did a great job!)... as I was skating I realized I was watching my feet... when I would get brave & look ahead I would start to wobble & look right back down at my feet again & lean forward so I wouldn't fall... JUST like Cathy was doing in the hall! She is going in the opposite direction... I am learning how to skate & she is trying to remember how to walk!

She is still very weak... she tugged at her pants to let me know she needed to go to the bathroom. I helped her by pulling her pants down. She doesn't remember to wipe or wash her hands... you have to do this for her. And then you have to help her pull her pants back up. She is still wearing panties for now... And there is now a mat on the floor by her bed in case she falls out... trying to move around in bed or trying to get up & down. Since it is so hard for her to changes positions. Half of the time she needed a boost from me to get in & out of her chair... other times she was able to rock herself up on her own. She is still more tired. Taking naps, laying down while you are visiting. She also still enjoys watching TV, although she does not react to the funny scenes, she reacts to the music. She smiles whenever there is a song on. And Sunday when the church group was singing she was intent on listening to them, smiling each time they would look her way.

Kids: We have wanted to not shelter our kids from Grandma's illness. And up until this point we have been very open with them... taking time to talk with them & letting them ask questions. But the looks on their faces Sunday watching Grandma try to swallow... I just can't do that. Mia asked me, "Mom, is Grandma dying? Why can't she eat right?" And Chase just stared at her and then would look down and then look back and then look away again. After we left I talked with them about things. I explained the best I could what was going on. Chase said he still wants to see Grandma... but not when she is eating if that was OK. As always he says, "I don't want to forget Grandma. I don't want to forget all the fun times we had together like when we went to get ice cream. I want to see her." And Mia just repeated what he said... as Chase rolled his eyes at his little sister for repeating him... she still is too young to grasp it all, but she is grasping enough. So from now on I will try my best not to take them at eating times... and if we come at a snack or meal time... I will have them sit in her room & watch a movie. I am mad at myself for not removing them from the situation at the time Sunday, but we were there in the middle of a church service, I kept thinking it would be rude to leave, but looking back I should have taken them to her room...

Thanks to everyone for their thoughts & prayers this past week! And thanks to the staff at the NH & Hospice for all of your care for Cathy. Words cannot express our gratitude for all everyone is doing.

Note from Barb

Much better day today! I went to see Cathy before work this morning and she was smiles and cleaning up her breakfast tray and they said her night was good. Then I went after work and she led me to the main dinning room for a movie residents were watching, we watched it for about a half hour and she was all smiles, lots of music in it. They said Gayle and hospice had been there before me and of course Brad had been there in the morning. Someone from hospice said to me" Cathy sure is popular around here". I said "She sure is, she's the girl!" Have a safe trip over tomorrow night. Love, Barb

Downturn update

I talked with Brad & Gayle and today is a better day. Brad talked with Hospice while he was there this morning & they discussed a few options to help her out. She is too weak to move around in bed... where she lays down is pretty much where she stays. It is possible that she rolled out of bed yesterday (??) trying to move around. Hospice is hopefully going to get a bed for her that raises & lowers, and also a mat for the floor.

Yesterday we were definately SCARED & very very sad... we were thinking in terms of she only had a few days or a few weeks. Toby & family were ready to drive down from North Dakota for the weekend.

I called Angie (Nurse) this afternoon & she said Cathy is having a better day. She is still having difficulty eating, but nothing worse than before. And quite possibly the improvement could be the medication changes made yesterday.

Thanks for all the thoughts & prayers from everyone! It is such a comforting feeling!!

Downturn....

This morning Cathy was found on the floor... somewhere between her bed & the bathroom. She was too weak to get up on her own. I can't tell you 100% the cause of it... she could have just fallen, but after talking to everyone it sounds like something more... maybe a small stroke or maybe just another part of this awful disease. (her vitals were stable) Gayle said she looked pale, did not have her usual smile, & was very lethargic in the morning. When Brad stopped in she was in bed, he can usually coax her out, but he couldn't this morning. It sounds like as the day went on she began to improve. I talked with the Angie (the Nurse) around lunchtime & she said she was up and Hospice was helping her with lunch. She had called Dr. Loepfe's office & gotten some changes in her meds. (Stopping the Seroquel & I think lowering the dose on another. She is not strong enough now to lift a pillow let alone get angry with someone or race out of the building.) She said the staff was even shocked at how much she had changed over night. I am so Thankful for Angie, even when she is having a crazy busy day she still takes the time to talk to me... just listen sometimes!

It was so hard to not just jump in the van & go see her! I struggled with that all day... but the kids were in school. I talked to Jean on the phone (she is in sunny warm Florida, & we are all her in below zero temps!!) & she is planning a trip back soon. I missed a call from Aunt Charlene, hopefully I will catch her tomorrow. I finally called Barb, I just needed a womans opinion... did we need to get there 'now' or could we wait til this weekend. (I know it is impossible to know... but I knew she would at least understand how I was feeling) She stopped back in to see Cathy after work & called me, she felt it was okay to wait until this weekend. Jackie had stopped in this evening & it sounds like Ryan had as well.

I am hoping that whatever happened to Cath this morning, it will not make it even harder for her to swallow... but realistically I know that is a big possibility. It sounds like Hospice is going to start giving her drops for her excessive drooling while eating.

Cathy has been on what seems to be a 'plateau' since before Thanksgiving. We knew that the time would come when she would take another step down again, that seems to be the way she progresses. For awhile she progresses quickly & then it slows down & then it picks up again. But truly she does not have many steps to go... and for the first time I have felt "scared". Brad & I talked about this today. We have been angry... and sad... and now scared.

It has been almost a year since we moved her into the nursing home... the week of Brad's birthday last year. I am hoping & praying that his birthday this year is not filled with that same kind of sadness.

Marley & Me

First of all I have to apologize to all of you that are wondering, "what happened to the blog?". I thought I would get all computer savvy & try out a new template... only to find out I am NOT computer savvy & lost my old template!!! oops... Hopefully I saved most everything & have tried my best to piece it all back together.

Brad was home this weekend & we took the kids to "Marley & Me". (Warning! If you haven't seen it or read the book... don't read any further!!!!) I had read the book a year ago & already prepared the kids for the ending, in hopes to prevent to much drama afterwards. The movie is a definite for all dog lovers, Brad & I kept looking at each other laughing and smiling. But the end... well Chase was holding my hand, Mia had her head on my shoulder, I was sobbing, & I heard Brad sniffling. The movie brought out so many emotions in us. Mostly because our 1st baby & Cathy's 1st Granddog was our Yellow Lab "Bud". We cried remembering Bud, we cried remembering how Cathy cared for him the last year of his life (the vet recommended we put him down, but Cathy took him home to Wisconsin with her & cared for him! Doggy Hospice Care), & we cried at the 'thought' of loss... & for me... the thought of losing Cathy as well.

Cathy was & is an Animal Lover. She would have Loved this movie.

Below is a picture of Bud & his favorite tire. Plus I am posting my fav picture of Cathy & Misty again... because it makes me smile! :)

I talked to Brad this morning after he had stopped to see his Mom. The past few times she has been in bed when he has stopped... but today she was sitting in the TV room & smiling at him as he walked in! Hospice seems to be getting off to a good start... it will take them awhile to build relationships with her. Hopefully the staff at the NH knows that we appreciate all they do as well. And we can work together as a team to give Cathy the best care possible!

Note from Barb S

Hi everyone, just got back from spending time with your mom this afternoon. This is my only day off this week, so worked out perfect that hospice is on board now so your mom doesn't have to miss the 2:00 activities if we can not be there at that time. When I've gone in the evenings Cathy has been in bed already. I told her I will stop right after work tomorrow. The hospice volunteer was just taking her to the dinning room when I got there, her name is Bonnie. She did great with your mom, although Cathy seemed very tired today and not much for smiles which is unusual. I've known Bonnie for a long time, infact Pete and I did hospice volunteer training at the same time she did in 2003. She was a CNA for homecare at the hospital, but when they lost the homecare contract, she lost her job. I filled her in on some things your mom enjoys and the family. Cathy put a Princess movie in for them and I left. Well, I better go now. Love to you all and take care. Barb

__________________________

I was just thinking I would like to write about how Hospice is going for Cathy, but it is hard to write about it since I am not there. And then I opened up my email to find this note from Barb... THANKS BARB!!! :)

Hospice!!!!!!!!!!

Just a quick note to let you all know that Cathy is finally getting Hospice!!! More details to come... (busy week with the kiddos being back to school!) Gayle just met with them & they are finalizing details. It all started with Gayle pushing for more help at the Nursing Home. We are all happy with the staff that cares for Cathy now... they are just VERY short handed! (like most places I am sure)

Also posting a picture of our visit to Grandma Cathy on our way back from Iowa for Christmas. We took in the movie "Grumpier Old Men" for her, she used to Love watching those movies. Chase pulled a chair up next to Grandma & watched part of the movie with her.