Recap of Respite Week

So as I said in my last post Dad was at Providence Mt. St Vincent in West Seattle all week. It sounds like it was a really productive week for him. On Sunday Mom, Angie and I got up early to watch Johnny's 5K (the color run). Then mom rushed off so she could go to church with Dad... Allison and her boyfriend also joined them. Angie and I got tacos for everyone and brought them to dads place. We all sat in his room and chit chatted and ate which was nice. Dad was REALLY quiet and it was extremely difficult for any of us to hear what he was saying. Mom made an alphabet board for him with a few key phrases as well but mostly so he could spell out what he wanted. We all got a kick out of it. Poor dad though was extremely frustrated and told us  that he is having a hard time breathing and that's why it is so hard to get the words out. This is the first I think any of us have heard about this. This disease is so hard because he seems like he is doing great and then he tells us something like that and it sadly means more is going on than any of us know about. Johnny came a little later and we all went outside for a nice walk. Dad pushed me in the chair and Johnny was really impressed with how well he walks that way! I left shortly after that, it sounds like Angie and Johnny did as well. Mom stayed until the nurses finally kicked her out :)

Monday night Dad had called and asked me to bring him a few things from their apartment. I knew Allison was going over there so I tried to see if she could get the stuff, only to realize that none of us had access to the apartment. Mom had taken a babysitting job to earn a little cash so she wasn't going to be able to let us in :( I believe Allison had a nice visit and then I went over first thing Tuesday morning to bring dad the shoes and pills he requested. When I walked into his room he had a huge smile on his face before he even realized it was me... so even though he might complain about his week away I think he secretly liked it! :)  He said that he hadn't been sleeping well, however he looked more refreshed then I have seen him look in a long time! He was telling me that he had already had two sessions of therapy that morning working on his voice and word skills. I could tell his brain was a bit fried from it but for the most part he seems really good. I told him I needed to get going and he said, no problem I'm just going to wash my hair in the sink! Um... ok well let me help you! So we as grandma June would say "warshed his head" in the sink :) Then as I was saying my goodbyes he decided he wanted to walk me to the elevators but he was having a really hard time walking he just couldn't make his legs go and I was not comfortable with leaving him at the elevators if he couldn't walk back! So I had him push me in his chair and then I pushed him back to his room and said goodbye.

Sounds like Allison went back over there on Tuesday night and brought dad a new microphone for his voice amplifier. He was really excited about it last night, and it works much better!

Thursday night I stopped by for a bit. He was sitting in his room having a beer :) We watched Evening magazine together and of course there was a really touching segment about childrens hospital on there which made him get emotional and then whatever hollywood gossip show that came on next was talking about Donna summers and he totally lost it! I asked him if he was ok? He started laughing and just said ya I don't know why I do that! He's acting really strong but I think he is terrified of everything that is happening to him. :( He told me that this week had been really good for him and he felt like even though he was physically and mentally drained he had gotten a lot of out it. He learned that with weighted silverware he can feed himself, he is remembering how to retrain his voice to be LOUD, and he walked me with no problem to the elevator last night :) All really good things!
Mom is picking him up at 2:30 today and Angie has planted a bunch of new pots on their balcony and we are going to go straighten up their place before they get home so they have a clean house! Their friends Pat and Mike Charles are coming on Sunday night which they are both over the moon about! We are going to BBQ here with everyone on Monday night so dad was really excited to hear that!
I think both Mom and Dad got a lot out of the week. As I said last week I think it was really good for dad to be monitored 24 hours a day so people know exactly what he needs and can help mom create a schedule for him. I think it was nice for mom to have a break even though I think she babysat more than she was supposed to! She is really excited to pick him up today! Tomorrow they celebrate their 28th wedding anniversary! Crazy :)

Mom and Johnny at the color run

The alphabet board mom made... we like #3 best :)

Dad just laughing at mom!

Crazy Week!

First of all I want to thank everyone for the outpouring of generosity and support! Mom and dad have received gift cards, wish list items and had numerous visitors this past week! We cannot tell you how grateful we all are and how helpful it all is.

Saturday Grandma Joan and Grandpa Jim came over for a bit, and then their friend Terry Donovan stopped by with goodies and spent a few hours with them. Then they had a fun dinner with their friends Colleen and Clayton Packard on Sunday night. Sounds like they may have had too much fun as they usually do with the Packards! Monday night they BBQ'd at Angie's house. Angie said dad was pretty wiped and out of it but it was a nice evening and always nice to get him out and about.  Tuesday they had more visitors!! Mike Davidson and his fiance Reese came over and watched the voice with dad (which he loves!) and sounds like they had a nice visit as well.

Dad and Clayton Packard!

Wednesday us kids got an email from mom saying that they had found a placement for dad and that she was going to get a week of MUCH NEEDED respite! She was really nervous to tell him about it, but all of us were 100% behind her. She actually text all of us that evening and needed just an hour off... Angie went over and mom was asleep within 20mins of her being there and slept all the way until 9am! So Thursday morning mom told dad about the respite and he lost it! He was extremely upset and felt betrayed by his doctors and thought they were going to never let him come home. Angie rushed over there and by the time she got there he was much more calm and starting to accept it. Basically  mom just needs a week long nap! He's not being sent away forever... its just one week! He had a doctors appointment on Thursday as well with a new neurologist.  She told dad that this week is going to be great for him as he is going to have tons of intense physical therapy and many nurses focusing on just him all week long! That made him much more comfortable with it all.

Dad's ride to the doctors

Thursday night moms sister Christy came over with her little dog lily who dad just loves! So although it started out as a rough day it sounds like he was completely fine and happy at the end of it :)
My biggest concern with him getting so upset about this respite is that he blames himself. Instead of being mad at the disease he takes it on as though it is his fault that he is a 24 hour job. He is trying so hard to continue to do everything for himself but it is a not safe and that is why mom is up all the time with him. I asked if he could have some one on one counseling while he was away for a week, but they want him to focus on PT and then they will provide the counseling once he is home. I just want him to come to grips with what is happening with his body and realize that it is not his fault.

On Friday Angie and I got to their place around 10:30. Dad was still asleep and mom gave us the list of things that needed to be packed and then she left for a hair appointment we had made her for her birthday! I was insistent that she didn't cancel it because we had already rescheduled it about 5 times! :) So Angie and I finished their laundry and got dads bags all packed up and then dad was up around noon. He had his first pills and some breakfast and we just sat and talked for awhile. He is definitely more accepting of his week away now. He is just mad because (in usual mike kissler form) "there is so much that needs to be done around the place!" And he is upset because he will miss a run that Johnny is doing on Sunday morning. Mom asked if he wanted her to pick him up for it but it is WAY too early so even if dad was home he would probably miss it.  So I made sure that everything I packed for dad was ok and then I walked to Safeway to get him some travel toiletries and some lunch stuff. We had a nice lunch on the deck in the sunshine! Mom got home around 2:30 and we loaded up and headed to West Seattle.

dads packing list :) :(

 Dad is at Providence Mount St. Vincent until next Friday May 18th. We pulled up and it is a very nice facility with AMAZING views of Elliot  bay and the city! Dad also has pretty decent views of the Olympics from his room. We were told to head straight to the 5th floor nurses station to check in. I was a little nervous when we got up there because it definitely had more of a hospital feel as I was walking down the hall. I found the nurses and they said "oh yes! Mike is in room 524 right next door!" So I peeked in and it is perfect! Obviously very simple but he has a private room with an actual door...(not a sheet like some of the others) a big window overlooking the grounds with beautiful flowers and the peak through view of the Olympics! Mom of course brought TONS of pictures and made it home in no time! A nurse named Stephanie checked him in and was extremely thorough and very fun and young! The woman who would be his evening nurse also came in to introduce herself and she was great as well! Then another man came in who I believe was from the PT department! He was cracking all kinds of jokes with dad and dad was all smiles! We were told that they can give him alcohol if we supply it so Angie and I went and got him a bottle of his favorite Rose :) We also left him with a box of treats from Macrina Bakery (All his favorites)!

  I feel very positive about him being in this facility and think it will be really good for him. I think this will be the best way for his entire medical team to really asses the level that he is at and be able to give him future help even when he is back home. Although I don't think he was extremely happy about the twin bed :), he seemed very relaxed and comfortable when we left.  He is definitely in really good hands and we are all going to go over there tomorrow after Johnny's race!

The View from Providence in West Seattle!

Me... playing in his room :)

Dads room

He doesn't look too happy here but I swear he was smiling!

I'm sure we'll have a lot more info as the week goes on and definitely more pictures to share!!

Thank you again for all the support!

Yesterday Angie and I had a great day with dad! I had lots of ideas of what we could do, but all dad was interested in was going to get his hair cut! We got to mom and dads at 10am... which is much earlier than normal but dad was ready to go! I had asked mom if it would be ok to come early so we could do something more fun and it appears that if we give that sort or warning, dad sleeps through the night and gets himself up and ready to go! So anyway, we got there and helped with his breakfast and then headed out. We ventured to Mercer Island to see dads favorite "barber" Amy. On our way there we happened to be on the freeway with a crazy looking ferrari. Dad claimed that the only person registered to this particular car in Washington is Paul Alan. Angie and I were trying to see if that was who was driving and had a  really good chuckle when we realized that it was the service guys having a joy ride! They were very well behaved the only reason we even noticed anything is because they were wearing the same shirt and driving a ferrari at maybe 55mph on the freeway! :)
So we took dad to get his hair did and then I dropped Angie at QFC because dad requested steaks and pork chops for this weekend. Then Angie walked to meet us at the drug store where dad and I were picking out new reading glasses. Angie walked in and I was just laughing at dad... he didn't understand that the type that he liked didn't come in the percentage he needed! He just kept pulling the same pair down and not getting it... when Angie joined the party we were dying laughing! I wish I was a better writer so I could explain better but maybe the pics will help...
After we finished at Rite Aid, we headed to lunch. Dad had requested fish and chips from Freshies... on Mercer Island. On our way there dad mentioned that he was hoping the owner was there. He said that he and his friend Larry Ellestad were his first customers... Angie noticed right away that the owner was there and told dad, but also commented that he was in his car on his way out so "lets not bother him" So we got there and got dad out of the car and were walking toward to the shop and the owner got out of his car and came over and shook dads hand and said it was so good to see him asked him how he was and thanked him for coming in. Dad got a little emotional after he walked away... lunch at Freshies pretty much made his day! We had a great time and really yummy food and just as we were packing up it started to rain! Perfect timing!!
We got dad home and Angie asked him if he wanted to walk a few laps in the garage? He hesitated and then said yup! So Angie hopped in the wheelchair and Dad pushed her around a few times which was great! Then we headed upstairs and Angie helped him with some plants on the patio while I marinated the pork and steak for the weekend! All and all it was a great day!!

                                               Dad and Angie at Freshie's!

He wouldn't let go of his lolipop! :)

                Me trying to help dad with his straw situation!

Dad checking himself out in his new glasses :)

Pushing Angie around their garage!

MSA Support Group

Hi it's Angie,

   Last Monday I went with Mom to an MSA support group at Virginia Mason.  They meet once a month and our family has been encouraged to attend. Mom and I went to the first one, both of us nervous and in agreement that we were just going to listen this time. Well we walked in and it was much more intimate than either of us expected. There were 6 other couples and 1 wife/caregiver (Kathy) and us. So much for just listening.  It was an interesting experience. The people there, including us, were all at different stages of dealing with this disease.

   One couple sitting across from us had just received their diagnosis a few days prior. By looking at the man I thought for sure he was farther along in the disease than dad. He was skinny and gaunt looking and his mouth hung open but then he picked up a pitcher of water and poured himself a glass and after the meeting was over he got up and walked on his own out of the room. Two things my Dad could not do.

   Another couple at first looked as if the wife was the sick one. She was in a wheelchair and he was talking about how he just retired and how he was enjoying it and they are taking a train trip across country this summer. Then as he was talking I realized he, the husband not the wife in wheelchair, was the spouse that was afflicted with MSA.  He was talking about how he is still driving but he has had a couple scary moments including rear ending someone when his foot froze on the gas pedal.  He said his doctor hadn't said anything about not driving yet while his wife shot him a dirty look. This reminded me of not so long ago a certain Mike Kissler in denial about his driving future. It sucks to have that Independence taken away form you. I wanted to cry because that man was so cute and happy and positive. I wanted to cry because that man will be a totally different man a year even 6 months from now. I wanted to cry because seeing his wife in a wheelchair reminded me that there is always someone who has it a little worse than you do. I wanted to cry because this fucking MSA shit sucks.

   The woman sitting next to us was Kathy. Her husband, Jim, started this group. He was not there. The woman leading the group asked Kathy to give us all an update on Jim.  Jim is 54 years old. He is nearing the end of his fight with MSA. He is on a feeding tube because the disease has made swallowing impossible. He was recently hospitalized for aspiration and Kathy was told by doctors to prepare for the worst. As Kathy said, "Jim proved those doctors wrong" He is now in an adult family home as Kathy realized while he was hospitalized that she needed to move him at least 3x a day to avoid bed sores. Something she is not physically strong enough to do herself.  When Mom asked how he adjusted to the family home Kathy said that he is fine during the day but scared to be alone at night. Because of this, Kathy sleeps on a cot next to him at night. Mom asked Kathy how she handled all of it as she seemed so well put together and an expert on all things MSA. Kathy's response to mom was "as they say in the south, where I'm from, I'm not right."
 Kathy told us that Jim has said "you have to reinvent yourself" with this disease it steals away so much from you you have to figure out how to keep quality of life.

All in all, the support group was helpful if not a bit depressing. I'm sure it will be a good place to vent in the future.

Just a quick one!

On Friday we lucked out and it was nice enough to take dad on a quick walk! Quick turned into about a half hour, and just doing loops around the neighborhood! It was fun though and I just babbled and dad enjoyed looking at all the flowers and such! I was getting a little beat going up the hills again and it was almost time for Nancy #2 to get there so we started to head back and Dad told me to sit in the chair. I was really nervous for him to push me because he (even he has commented on it) is really not walking well at all these days and freezing a lot more then even a few weeks ago. He insisted though and I told him I am going to get him a helmet! He only pushed me a block and was so happy and said it felt really good so I pushed him into the garage and asked if he wanted to continue pushing me... so we did a few laps in the garage! He was really happy to do it and it was nice because I could hear him much better when he was pushing me! After about two laps he had had it and we went back upstairs and I made him some lunch and then left him with Nancy #2. We have Johnny's birthday coming up this weekend so we are hoping to BBQ or something at Angie and J's!!