Our weekend visit over February 22-24 went very well with Cathy. We went directly to the care center to see Cathy. When we arrived I knocked on her door and she was very angry at someone and she slammed the bathroom door into the other door. My heart sunk and I didn’t know what I was going to do. I was looking so forward to seeing her for the weekend. But as soon as I opened the door and said “Hey Cathy, it’s me” I got a big smile and a hug and kiss. The rest of the weekend went very well. Full of hugs, kisses, and lots of bear pushing and saying “Luv you mom” and then I would have to say “that’s Toby.” Toby, what a hit that bear is. She is so proud of it and he makes her smile.
Saturday I have to admit I made a nuisance of myself. I will admit it, I visited her four times that day. But every time I went she was so happy full of big smiles and hugs. She brought me her book to sign each time and then we would take it back. We would walk and to look at the fish and then back to watch the movie “Ever After.” I hate that movie! On one occasion we put our canceller on our eyebrows and then got our lip gloss out of our purse and put that on our eyebrows. What a fashion statement! But we were smiling. Oh by the way we have either Gayle or Brad’s deodorant still in our purse. At least if we are traveling we won’t forget it. On occasion we have planned a weekend up to BLK River and Larry has forgotten his. So it is a good idea to carry it in your purse.
Sunday’s visit she showed me 2 spots on her door that the wood grain looked like a person’s face. 2 eyes, a nose, mouth, and ears. Amazing that she picked them out. Her speech has really gone down hill since I last saw her in Iowa just before she went to the Nursing home. But I did get nods of yes and no from her. There were times that I was sitting there thinking why is she here, that we could be home watching movies, drinking coffee, and snacking. I do know in my heart that this is much better for her, but she was having such a good weekend. I told her that I had to go home and back to work but I would be up to see her again very soon.
Wednesday, February 27, 2008
2 notes from Barb S
Emails received about Monday:
Gabe called me about 3:30 yesterday afternoon, said she was worked up and he couldn't redirect her. I went right over and stayed until she was calm. When visitors would come in she gave hugs and smiles to those she knows and then would go back into her room and be alittle upset, but was fine when I left. Smiling and happy. She'll be fine. I think Mons. are the worst for her. I have noticed before, that after a weekend when she has lots of visits she's worked up on Mon. It's great she has visits, so this may happen sometimes. I checked in again later last night and things were O.K. Ryan was going to go up last night after I told him, but I told him she was settled in for the night, so he was going up this morning. I know how hard it is, but she will have days just like others that live up there. Take care! Love Barb
_________________________
Update:
Hi Again, Things are going better. I went up this a.m. and Ryan was there and she was calmer once she found out he had mini musketeers in his pocket. She let him hook her T.V. back up and watched movies with him. I had to go to work for a meeting, but Ryan called me later and said she let him put her things back in closet and was ready for him to leave at lunch time. I just checked in after walking and she's alright. Hope tomorrow is a good day for her. Love to you all, Barb
Gabe called me about 3:30 yesterday afternoon, said she was worked up and he couldn't redirect her. I went right over and stayed until she was calm. When visitors would come in she gave hugs and smiles to those she knows and then would go back into her room and be alittle upset, but was fine when I left. Smiling and happy. She'll be fine. I think Mons. are the worst for her. I have noticed before, that after a weekend when she has lots of visits she's worked up on Mon. It's great she has visits, so this may happen sometimes. I checked in again later last night and things were O.K. Ryan was going to go up last night after I told him, but I told him she was settled in for the night, so he was going up this morning. I know how hard it is, but she will have days just like others that live up there. Take care! Love Barb
_________________________
Update:
Hi Again, Things are going better. I went up this a.m. and Ryan was there and she was calmer once she found out he had mini musketeers in his pocket. She let him hook her T.V. back up and watched movies with him. I had to go to work for a meeting, but Ryan called me later and said she let him put her things back in closet and was ready for him to leave at lunch time. I just checked in after walking and she's alright. Hope tomorrow is a good day for her. Love to you all, Barb
Monday, February 25, 2008
Anger again...
We talked to Gayle tonight and he said Cathy had a 'Bad' day today. We are still not clear on all the details but it sounds like she was very frustrated/angry today, had her things packed up again and even her TV on the floor.?? I guess the home called Barb S. and she was able to go over and help calm her down but it was harder this time. (Thank You Barb for being there!)
It is so hard being far away at times like this. Even this weekend we almost picked up & drove up for the day. After spending so much time with her we have our ideas about what is setting her off... but we don't know exactly since we aren't there. And we can't help from a distance. URGH!
I mentioned to Gayle that we should still look into checking out other places just in case they tell us she needs to move. Just to be prepared and have a plan. Once again I want to just drop everything and drive up to help do that also. But I am working full time the next 2 weeks.
So I am sending up some Prayers tonight... for Cathy, for the family, for good friends, for the staff at the NH, and for hope.
____________________________________________________________
We were feeling great about things after this weekend. Rhonda & Larry were able to go up and spend the weekend. Rhonda said she was angry at someone when she got there on Saturday but the anger left quickly after she saw Rhonda coming in. She had alot of great visits over the weekend with her and was feeling good about things also. She said Cathy was always holding her bear alot! :)
Gayle has also been able to visit more. Plus Gayle takes Misty along. Gayle & Larry took Misty in on Saturday and Cathy just 'lights up' when she comes in. Gayle did get in trouble on one visit for not bringing in chocolate... he realized why she was upset and went and got a candy bar from the nurse... then Cathy was all smiles again! :)
Brad said he talked to Ryan and they have been there to visit also. He also asked Ryan if his family had been in and he said they had and it had gone well also.
It is so hard being far away at times like this. Even this weekend we almost picked up & drove up for the day. After spending so much time with her we have our ideas about what is setting her off... but we don't know exactly since we aren't there. And we can't help from a distance. URGH!
I mentioned to Gayle that we should still look into checking out other places just in case they tell us she needs to move. Just to be prepared and have a plan. Once again I want to just drop everything and drive up to help do that also. But I am working full time the next 2 weeks.
So I am sending up some Prayers tonight... for Cathy, for the family, for good friends, for the staff at the NH, and for hope.
____________________________________________________________
We were feeling great about things after this weekend. Rhonda & Larry were able to go up and spend the weekend. Rhonda said she was angry at someone when she got there on Saturday but the anger left quickly after she saw Rhonda coming in. She had alot of great visits over the weekend with her and was feeling good about things also. She said Cathy was always holding her bear alot! :)
Gayle has also been able to visit more. Plus Gayle takes Misty along. Gayle & Larry took Misty in on Saturday and Cathy just 'lights up' when she comes in. Gayle did get in trouble on one visit for not bringing in chocolate... he realized why she was upset and went and got a candy bar from the nurse... then Cathy was all smiles again! :)
Brad said he talked to Ryan and they have been there to visit also. He also asked Ryan if his family had been in and he said they had and it had gone well also.
Wednesday, February 20, 2008
Pictures & New Posts
Below are 4 new posts: Pictures from Jean, Note from Toby, Note from Barb S., & overview from the last week.
The pictures below were taken the week Jean was visiting... she just sent me a new CD since the first one wouldn't download. Thanks Jean! Wish you could have sent some of the sunny Florida weather to us too!! We are in a Blizzard here again!!! Uffda!!!
__________________________
Cathy with Remote in hand (These are the PJ's Cathy got from Gayle for Christmas) sitting in her chair. This chair happens to be her Grandma Minnie's.
Cathy & her Build-a-Bear
The pictures below were taken the week Jean was visiting... she just sent me a new CD since the first one wouldn't download. Thanks Jean! Wish you could have sent some of the sunny Florida weather to us too!! We are in a Blizzard here again!!! Uffda!!!
__________________________
Cathy with Remote in hand (These are the PJ's Cathy got from Gayle for Christmas) sitting in her chair. This chair happens to be her Grandma Minnie's.
Cathy & her Build-a-Bear
"Coffee Time" - this is in the kitchen on her unit... she drinks alot of coffee! One of the nurses (Angie) told us she brews Cathy coffee first thing in the morning! They have even started putting carafe's of coffee in the kitchen instead of the pot because Cathy was making so much!!!
Barb S. & Cathy
Cathy's New TV - notice how she has cleared off the counter, shelf, & bulletin board - she is constantly moving things around in her room. Restless & Busy.
Jean & Cathy
Brad, Cathy, & I
Chase & Mia coloring on Grandma's Bed last week.
Jean & Cathy
Brad, Cathy, & I
Chase & Mia coloring on Grandma's Bed last week.
Note from Toby
19 Feb 08 This was my first visit and it went pretty well. On Saturday I did not get to Black River until around 1400 but went straight to the NH to see Mom. After a quick call to Brad for directions I navigated the halls to her unit. She was sanding in the hall waving like Forest Gump to Lt Dan. I don’t say that to be disrespectful but to illustrate the amount of excitement! She had a big grin and was giggling up a storm. I was greeted with a hug and a kiss. She eagerly accepted the customary offering of a Three Musketeers bar and a Diet Coke and proceeded to stick the whole candy bar in her mouth! (Note to self: buy the miniature candy bars.) With the freshly inhaled candy bar still in her mouth she attempted a drink of the Diet Coke. The result was a frothy mixture of chocolate and bubbles sprayed all over the wall and window followed by both of us laughing and cleaning up the shrapnel. We had not quite finished cleaning up the chocolate and she was popping half of the pack of Strawberry/lime trident gum that I had intended to surprise her with into her mouth. The gum made her quite content so I confiscated the remainder and gave it to Melanie (a wonderful nurse) for rationing. We then watched the first 15 min of “Ever After” about 10 times in a row while I told her about the kids and how things were going. She didn’t show much interest in what I was saying and was in and out of the room but it was nice to be able to talk to her. Her speech has deteriorated rapidly over the last year but in the time I was there she did manage to say some names while looking at pictures as well as the “on fire” phrase but every word was a struggle. I think the fact that I see mom less than the other members of the family makes the progression more apparent. After about an hour she handed me my jacket and keys. I asked if it was time for me to go and she said yes (with a giggle). She then thrust the bear that we had made at Build-a-Bear into my arms. The voice was already fading after a couple of months from pushing the button so often. She seems to love the bear so I left with the determination to get the bear fixed by the next day but left her with a stuffed animal that Brooklynn had plucked from her collection to give to grandma. It plays the song “Wild Thing” and seemed to be a suitable addition to the rapidly expanding family of stuffed animals living with her. Every time she pressed the critter she would start dancing and even showed it off to the staff and other residents. With the help of dad and a very nice lady at the Build-a-Bear store we were able to do a voice box transplant and basic suture job to make the bear almost as good as new. I gave it to her the following day as planned.
The rest of the visits were pretty much the same. She is always changing her room around, packing and unpacking, and hanging pictures and then taking them down again. She is regularly staring down the hallway looking for visitors and waving at anyone who moves. There is usually a smile on her face and she seems content. I think it is reasonable to conclude that having her own room is very positive. It is a convenience but may have been the one thing that has allowed her to adjust so rapidly. It plays to the social deterioration of the disease and allows some degree of separation when she wishes to have privacy yet keeps a social environment at arms reach. Dad also went with me to visit once and it went very well. She was very warm and full of hugs; not angry like she has been over the last couple of months.
Over all it was a positive trip. Hopefully I will able to return for another visit soon. There is no doubt she enjoys visitors and I hope as many people come to visit as possible in the short time she has left. While I understand that not everyone can make it to see her, I would like to thank all who have taken the time to visit. It means a lot to me and judging by the smile on mom’s face it still means something to her.
God Bless
Toby
The rest of the visits were pretty much the same. She is always changing her room around, packing and unpacking, and hanging pictures and then taking them down again. She is regularly staring down the hallway looking for visitors and waving at anyone who moves. There is usually a smile on her face and she seems content. I think it is reasonable to conclude that having her own room is very positive. It is a convenience but may have been the one thing that has allowed her to adjust so rapidly. It plays to the social deterioration of the disease and allows some degree of separation when she wishes to have privacy yet keeps a social environment at arms reach. Dad also went with me to visit once and it went very well. She was very warm and full of hugs; not angry like she has been over the last couple of months.
Over all it was a positive trip. Hopefully I will able to return for another visit soon. There is no doubt she enjoys visitors and I hope as many people come to visit as possible in the short time she has left. While I understand that not everyone can make it to see her, I would like to thank all who have taken the time to visit. It means a lot to me and judging by the smile on mom’s face it still means something to her.
God Bless
Toby
Tuesday, February 19, 2008
Update from Barb
Hi everyone, Glad you all got up to see your mom and very happy your dad can visit now also. I've been so used to seeing Cathy everyday that being gone a few days seemed weird. She greeted me with open arms today, but guess she missed seeing Pete also because when I left she said Pete. I asked if I should bring him with tomorrow and she said yes. I know you are concerned about her speech. Each day we work on reading things, such as the menu and her cards. Dylan told me he's going to take one of his dog magazines to Cathy because she likes dogs. Brad, he also couldn't wait to tell us you drive a train. She knows the routine when I get there because she leads me right to the menu and I point at the words and she says them. I asked who gave her the dog and balloon and she said Gayle with a smile and got his card out to show me. This is so great!!!! I also reassure her each day how much Gayle and all of you love her. Today one of the residents kept coming into her room and she would get up, smile, pat the women on the back and push her back out, then come in room and close her door. She was also busy giving staff coffee. I just came from Ryans and he was concerned about the lack of speech also, but so glad he's close. They are taking the kids up tomorrow, since they found out Laney isn't contagious with anything. She has ear infection. I asked Cathy if she had visitors while I was gone and she said" Toby, Brad, Ryan with another big smile. Our love to you all, Barb
Highlights from the past week
Hello Everyone! Sorry it has been awhile since I have posted... I wanted to Highlight a few of the things that have happened over the past week.
CARE CONFERENCE
Brad & I went up for the 14 day care conference on the 14th along with Gayle. We met with the staff & department heads to discuss how things are going with Cathy. And the news is "GOOD"!!!!! She is settling in well, getting along great with the staff, & seems quite content. We also found out that the 'trial' period is over and she is now officially a resident! All & all it was a good meeting and we were very pleased.
GAYLES FIRST VISIT
Brad & I visited Cathy after lunch on the 14th and Brad asked his Mom, "Mom, would you like Dad to come visit and bring Misty with him?" And she shook her head yes. So... that night the 4 of us visited... and it went surprisingly well! Yes, I was a bit nervous (more like alot nervous!) about going so soon... but Brad was confident it would go well... & he was right, it went well! (I normally hate it when Brad is right & I am wrong... but in this case I was thrilled!) When we got there she was already in bed which may have helped. And when we left she gave Gayle a kiss!! HALLELUJAH!!!!!
TOBY'S VISIT
Toby was able to make it up for a long weekend! He had a busy weekend spending time with his Mom, driving down to the Dells to fix the Build-A-Bear that she LOVES (we found out that the build-a-bears voicebox lasts for around 1000 pushes... and Cathy's lasted about 2 months... obviously she pushes it alot!! She LOVES it!), visiting with family and friends, & spending more time with his Mom. I was so excited for Cathy! I knew she was looking forward to seeing Toby!!
RYAN'S MOVE
Ryan & his family moved up to Wisconsin this past Friday. Brad & I actually passed them with their moving van on the Interstate... we were on our way home to Iowa & they were heading to their new home up north. We are happy that she is going to have one of her boys close.
SPEECH
We are noticing that she is speaking less... talking quieter... having a harder time getting words out... mumbling a bit. Quite simply... it is sad.
OVERALL
It is comforting knowing that things are going well! She is doing better than expected transitioning into the NH... but as we had hoped. We are so RELIEVED that Gayle is able to visit now!!! We miss seeing her everyday, being around her, her warm hugs, her sweet kisses on the cheek, her pats on the knee, & many more things... But, we can't just pick up our lives & head North, even though we both want to. It is more than difficult to see how fast she is changing and watch the Cathy we Love slowly fade away...
We are Thankful again for all her Wonderful friends & family who are visiting daily! I will continue to post what I know from a distance...
CARE CONFERENCE
Brad & I went up for the 14 day care conference on the 14th along with Gayle. We met with the staff & department heads to discuss how things are going with Cathy. And the news is "GOOD"!!!!! She is settling in well, getting along great with the staff, & seems quite content. We also found out that the 'trial' period is over and she is now officially a resident! All & all it was a good meeting and we were very pleased.
GAYLES FIRST VISIT
Brad & I visited Cathy after lunch on the 14th and Brad asked his Mom, "Mom, would you like Dad to come visit and bring Misty with him?" And she shook her head yes. So... that night the 4 of us visited... and it went surprisingly well! Yes, I was a bit nervous (more like alot nervous!) about going so soon... but Brad was confident it would go well... & he was right, it went well! (I normally hate it when Brad is right & I am wrong... but in this case I was thrilled!) When we got there she was already in bed which may have helped. And when we left she gave Gayle a kiss!! HALLELUJAH!!!!!
TOBY'S VISIT
Toby was able to make it up for a long weekend! He had a busy weekend spending time with his Mom, driving down to the Dells to fix the Build-A-Bear that she LOVES (we found out that the build-a-bears voicebox lasts for around 1000 pushes... and Cathy's lasted about 2 months... obviously she pushes it alot!! She LOVES it!), visiting with family and friends, & spending more time with his Mom. I was so excited for Cathy! I knew she was looking forward to seeing Toby!!
RYAN'S MOVE
Ryan & his family moved up to Wisconsin this past Friday. Brad & I actually passed them with their moving van on the Interstate... we were on our way home to Iowa & they were heading to their new home up north. We are happy that she is going to have one of her boys close.
SPEECH
We are noticing that she is speaking less... talking quieter... having a harder time getting words out... mumbling a bit. Quite simply... it is sad.
OVERALL
It is comforting knowing that things are going well! She is doing better than expected transitioning into the NH... but as we had hoped. We are so RELIEVED that Gayle is able to visit now!!! We miss seeing her everyday, being around her, her warm hugs, her sweet kisses on the cheek, her pats on the knee, & many more things... But, we can't just pick up our lives & head North, even though we both want to. It is more than difficult to see how fast she is changing and watch the Cathy we Love slowly fade away...
We are Thankful again for all her Wonderful friends & family who are visiting daily! I will continue to post what I know from a distance...
Saturday, February 9, 2008
Grandkids first visit at the NH
The kiddos & I drove up late Friday night to spend a short weekend up here with Cathy. They have been asking alot of questions and wanted to see where Grandma lives & meet her friends. And I honestly wanted to come up and see her also. After spending so much time with her I didn't want her to feel abandoned by us. And I missed her also!
We drove through an ice storm in Minnesota... 30 mph on the Interstate & passed lots of vehicles in the ditch, one with it's wheels up in the air and police on the scene... I was thinking, this is why we don't normally travel up here in the winter!! It was a bit scary... but we made it safely.
This morning we headed up to the NH with lots of goodies for Grandma: Diet Coke from Grandpa, a bag of cherry flavored 3 musketeers, 2 tubes of lip gloss (caramel apple & latte flavors from VS... she loves them!), and an outfit she had left behind at our house. She greeted us at the door. She wasn't 'excited' but she was happy to see us all. Lots of hugs & she was happy to see the goodies. The first thing she did was take the kids to meet 'Tubby' (he was a tow truck driver in town that now lives in the NH... sad story... he was hit over the head when he was robbed at his shop! And they never caught the bad guys!!) Tubby was responsive with the kids, he even reached out towards Mia and tried to lift her up in his lap. He attempted to talk to the kids but it is hard to understand him. Cathy gave him a kiss on the cheek and we headed back to her room. Chase said, "Grandma is taking care of Tubby."
Cath was watching Everafter again & she had taken everything off the walls. She also had half of her stuff bagged up in the closet. She had gotten this singing flowerpot thing... not exactly sure who gave it to her... but she loves it. She took it out & played it for the kids... they loved it also. She was showing us her build-a-bear again and said, "Toby, on fire." and got tears in her eyes. I said, "Do you want to call Toby?" and she said, "Yes." So... we called Toby and her face lit up! It was the happiest we saw her all day!! We also called Aunt Charlene and Cathy listened to her longer than she usually listens on the phone... she was happy to hear her voice also. Brad called while we were there & she talked to him as well.
She handed me an empty tube of face make up (covergirl concealer stick - medium) that she likes to use. So the kiddos & I headed off to Wal-Mart while she went to lunch. She was fine with us leaving and quite honestly I think short visits work the best, especially when the kids are along. She seems to be more restless with them around, since they are busy & can't sit still very long... but I thought they did really well. (Our kids are used to nursing homes... we visit the NH in our hometown quite often & my parents take them as well... we have lots of family & friends living there.) Today the kids stopped a few times walking down the hall to talk to some ladies in wheelchairs. I was so proud of them both!!
We went back for another visit in the late afternoon. Barb S. was visiting again & they met us at the door. I was worried that Cathy was hoping to leave with us because she was holding her purse, notebook, & bear and pacing from her room to the main door. Barb & I looked at each other a few times... wondering... but when we decided to leave she didn't follow us. She went the other direction, towards supper.
We are planning on stopping again in the morning before we head home. -45 and blowing winds up here in Wisconsin... Brrrr (at least up here there is trees to block the wind, unlike home in Iowa!)
_______
Thanks also to everyone who has stopped in to visit Cathy. If you stop in ask the nurse for her sign in notebook... Jean brought in a notebook for people to sign... but Cathy keeps sneaking it out of the nurse's area & putting it in her drawer. Jean also put a sign on her door telling people to sign... but Cathy keeps sneaking the sign and putting it in her big notebook. Uffda! :)
Barb H visited this week and took her a 3 musketeers... she tried to hide it in the dresser drawer... but Cathy found it within minutes! I swear she is a bloodhound for sweets!!! :)
Jr. visited as well & Cathy served him with Coffee & a cookie!! :)
I also talked to some of the staff today and they said she has even gotten some of them coffee when she overheard them saying they would be taking a coffee break. She seems to really like the staff & enjoys helping them out.
We drove through an ice storm in Minnesota... 30 mph on the Interstate & passed lots of vehicles in the ditch, one with it's wheels up in the air and police on the scene... I was thinking, this is why we don't normally travel up here in the winter!! It was a bit scary... but we made it safely.
This morning we headed up to the NH with lots of goodies for Grandma: Diet Coke from Grandpa, a bag of cherry flavored 3 musketeers, 2 tubes of lip gloss (caramel apple & latte flavors from VS... she loves them!), and an outfit she had left behind at our house. She greeted us at the door. She wasn't 'excited' but she was happy to see us all. Lots of hugs & she was happy to see the goodies. The first thing she did was take the kids to meet 'Tubby' (he was a tow truck driver in town that now lives in the NH... sad story... he was hit over the head when he was robbed at his shop! And they never caught the bad guys!!) Tubby was responsive with the kids, he even reached out towards Mia and tried to lift her up in his lap. He attempted to talk to the kids but it is hard to understand him. Cathy gave him a kiss on the cheek and we headed back to her room. Chase said, "Grandma is taking care of Tubby."
Cath was watching Everafter again & she had taken everything off the walls. She also had half of her stuff bagged up in the closet. She had gotten this singing flowerpot thing... not exactly sure who gave it to her... but she loves it. She took it out & played it for the kids... they loved it also. She was showing us her build-a-bear again and said, "Toby, on fire." and got tears in her eyes. I said, "Do you want to call Toby?" and she said, "Yes." So... we called Toby and her face lit up! It was the happiest we saw her all day!! We also called Aunt Charlene and Cathy listened to her longer than she usually listens on the phone... she was happy to hear her voice also. Brad called while we were there & she talked to him as well.
She handed me an empty tube of face make up (covergirl concealer stick - medium) that she likes to use. So the kiddos & I headed off to Wal-Mart while she went to lunch. She was fine with us leaving and quite honestly I think short visits work the best, especially when the kids are along. She seems to be more restless with them around, since they are busy & can't sit still very long... but I thought they did really well. (Our kids are used to nursing homes... we visit the NH in our hometown quite often & my parents take them as well... we have lots of family & friends living there.) Today the kids stopped a few times walking down the hall to talk to some ladies in wheelchairs. I was so proud of them both!!
We went back for another visit in the late afternoon. Barb S. was visiting again & they met us at the door. I was worried that Cathy was hoping to leave with us because she was holding her purse, notebook, & bear and pacing from her room to the main door. Barb & I looked at each other a few times... wondering... but when we decided to leave she didn't follow us. She went the other direction, towards supper.
We are planning on stopping again in the morning before we head home. -45 and blowing winds up here in Wisconsin... Brrrr (at least up here there is trees to block the wind, unlike home in Iowa!)
_______
Thanks also to everyone who has stopped in to visit Cathy. If you stop in ask the nurse for her sign in notebook... Jean brought in a notebook for people to sign... but Cathy keeps sneaking it out of the nurse's area & putting it in her drawer. Jean also put a sign on her door telling people to sign... but Cathy keeps sneaking the sign and putting it in her big notebook. Uffda! :)
Barb H visited this week and took her a 3 musketeers... she tried to hide it in the dresser drawer... but Cathy found it within minutes! I swear she is a bloodhound for sweets!!! :)
Jr. visited as well & Cathy served him with Coffee & a cookie!! :)
I also talked to some of the staff today and they said she has even gotten some of them coffee when she overheard them saying they would be taking a coffee break. She seems to really like the staff & enjoys helping them out.
Updates from Barb S.
Cathy's friend Barb S. has been emailing Toby, Brad, & Ryan's families updates on how she is doing. I wanted to share these with all of you also! Thanks a million Barb!! Barb works & lives very close to the NH and stops by frequently to spend time with Cathy.
~ Thursday ~
Another great day! I just came home from seeing her. She's like the greeter for the unit. After I was there someone came in looking for a resident and Cathy said come on and showed them to the right room. She wasn't chewing gum today so I asked if it was all gone and she said yes. I told her I would bring her some tomorrow and she said 2 packs, so 2 packs it is. I asked if she still had little candy bars and she pointed into the kitchen and shook head yes. I'll check with staff every so often to see if she needs anything. Gabe also stopped to talk with us and asked Cathy if she wanted her hair washed and set. She shook her head no and I told her "we don't set our hair, do we?" She laughed and said no. Then I said how about just a wash and she agreed. Gabe said "you women". He said things are going good also. She seems so at home and relaxed now. No mention of Gayle and no On Fire again today. Progress! I haven't talked to Gayle, but Jean told me he is in Chicago. I'll talk with him this weekend. It has to be so hard for him, 36 yrs. and now can not go see her. Hopefully it won't be real long before he can try it. I can not imagine Pete and I not seeing each other after 32 yrs. It makes you realize, cherish everyday because you don't know what tomorrow will bring. Take care and love to you all. Love, Barb
~ Wednesday ~
Hi guys, just came from seeing your mom. GREAT DAY!!!! I saw Gabe, he said he stopped to see her and she was happy and doing good and nursing staff agreed. She saw me coming down hall and started waving and when I opened door, she said "work" I told her yesterday and called there earlier today and said I would be there after work. Before I left she was putting everyone up to the tables for supper. It was cute because she tried to push one and it wouldn't go. She said brakes, went to each side of chair and unlocked the brakes. She is adjusting so well, she's in a very good place. I told her I would see her tomorrow and it would be earlier in day because I'm off. She smiled, gave big hug and kiss on check, helped me with my coat as usual and said "bye tomorrow off". I'm so happy to spend this time with her, she's a special friend. Today we talked about when the boys played hockey and Pete was their coach. She pointed out window at rink and said "Dave hockey". We looked at rink last night and I had told her Dave was at hockey. You'll be happy to know that no one was ON FIRE the whole time I was there. YEAH! Take care and love you all!!!! Barb
~ Thursday ~
Another great day! I just came home from seeing her. She's like the greeter for the unit. After I was there someone came in looking for a resident and Cathy said come on and showed them to the right room. She wasn't chewing gum today so I asked if it was all gone and she said yes. I told her I would bring her some tomorrow and she said 2 packs, so 2 packs it is. I asked if she still had little candy bars and she pointed into the kitchen and shook head yes. I'll check with staff every so often to see if she needs anything. Gabe also stopped to talk with us and asked Cathy if she wanted her hair washed and set. She shook her head no and I told her "we don't set our hair, do we?" She laughed and said no. Then I said how about just a wash and she agreed. Gabe said "you women". He said things are going good also. She seems so at home and relaxed now. No mention of Gayle and no On Fire again today. Progress! I haven't talked to Gayle, but Jean told me he is in Chicago. I'll talk with him this weekend. It has to be so hard for him, 36 yrs. and now can not go see her. Hopefully it won't be real long before he can try it. I can not imagine Pete and I not seeing each other after 32 yrs. It makes you realize, cherish everyday because you don't know what tomorrow will bring. Take care and love to you all. Love, Barb
~ Wednesday ~
Hi guys, just came from seeing your mom. GREAT DAY!!!! I saw Gabe, he said he stopped to see her and she was happy and doing good and nursing staff agreed. She saw me coming down hall and started waving and when I opened door, she said "work" I told her yesterday and called there earlier today and said I would be there after work. Before I left she was putting everyone up to the tables for supper. It was cute because she tried to push one and it wouldn't go. She said brakes, went to each side of chair and unlocked the brakes. She is adjusting so well, she's in a very good place. I told her I would see her tomorrow and it would be earlier in day because I'm off. She smiled, gave big hug and kiss on check, helped me with my coat as usual and said "bye tomorrow off". I'm so happy to spend this time with her, she's a special friend. Today we talked about when the boys played hockey and Pete was their coach. She pointed out window at rink and said "Dave hockey". We looked at rink last night and I had told her Dave was at hockey. You'll be happy to know that no one was ON FIRE the whole time I was there. YEAH! Take care and love you all!!!! Barb
Monday, February 4, 2008
Helpless Feeling...
This morning at 9:30 my cell rang... it was the nursing home... Cathy was having a bad morning. She noticed a red truck parked outside & had started getting agitated. She had all her things packed up (we didn't give her a suitcase so I am guessing it was in trash bags from the NH) and was saying, "Gayle, On Fire!" and "Brad & Beth, On Fire!". The nurse was hoping we were still up in Wisconsin... but we weren't. (I really like this nurse she seems so compassionate & has such a calming presence about her!)
Helpless... we just wanted to jump in the car & go see her... I suppose this is what it feels like when your child goes off to college??
I thought Barb S. might be working today so I called Jean first. And actually she was already on her way there to see Cathy. So... she said she would call me later with an update. So... we waited. ~ Jean called about a half hour later & said Cathy was starting to settle down. When she had gotten there she had been very agitated. Gabe, one of the social workers, was trying to help her and he had actually gotten her to unpack her things. He was trying to explain that the truck outside wasn't Gayles or ours... that it was the city's truck. (Thank You Gabe & Jean!!!)
Jean called me this afternoon & said that Cathy kept saying, "Beth, On Fire." So she thought maybe I could talk to her on the phone. I said, "Hi, Cathy, it's Beth. Chase is in school today. We miss you." She repeated, "Chase is in school." Jean said she was nodding her head yes & smiled. Then she passed the phone back to Jean... she usually only last about 20 seconds listening on the phone anymore.
When Cathy was living with us she would have a day that was off every week or so. I am hoping that tomorrow will be good again. I am hoping that the staff is understanding. I am hoping that Cathy doesn't get worse in the anger & frustration area. I am hoping the weather is good so we can see her this weekend. I am hoping alot lately! HOPE
I put a call into both her Neurologists today. One to update them on how things are going & discuss the follow up appointment. And the other to see if his staff would be willing to come to the nursing home & do a mini information session on FTD/Pick's. I had heard from a friend (Thanks Sue!) we met at Mayo that they had done something similar when their son moved into his care home. I think it would be so helpful for the staff to understand this disease. It is similar to the Alzheimers patients they are used to... but yet so different.
Being this far away is so difficult... after spending so much time with her over the past year. I can now understand how Toby & Tracy have felt... being far away and not able to help. I just want to pack our things up & move North! ~ I know Ryan will be moving there on Friday. And I am hoping he will be willing to help with this part of her care. Having one of her boys close will be such a comfort to her, I feel like she thinks we have abandoned her. We are lucky that she has so many good friends up there... they have all been so Amazing!! People offer help... but you feel bad taking it because you know they have their lives to live also. But right now, we need them so desperately! And we are so Thankful for their support. How do you Thank someone for giving in that way??... it is the true meaning of friendship & compassion!!! Cathy is truly blessed with good friends!
Helpless... we just wanted to jump in the car & go see her... I suppose this is what it feels like when your child goes off to college??
I thought Barb S. might be working today so I called Jean first. And actually she was already on her way there to see Cathy. So... she said she would call me later with an update. So... we waited. ~ Jean called about a half hour later & said Cathy was starting to settle down. When she had gotten there she had been very agitated. Gabe, one of the social workers, was trying to help her and he had actually gotten her to unpack her things. He was trying to explain that the truck outside wasn't Gayles or ours... that it was the city's truck. (Thank You Gabe & Jean!!!)
Jean called me this afternoon & said that Cathy kept saying, "Beth, On Fire." So she thought maybe I could talk to her on the phone. I said, "Hi, Cathy, it's Beth. Chase is in school today. We miss you." She repeated, "Chase is in school." Jean said she was nodding her head yes & smiled. Then she passed the phone back to Jean... she usually only last about 20 seconds listening on the phone anymore.
When Cathy was living with us she would have a day that was off every week or so. I am hoping that tomorrow will be good again. I am hoping that the staff is understanding. I am hoping that Cathy doesn't get worse in the anger & frustration area. I am hoping the weather is good so we can see her this weekend. I am hoping alot lately! HOPE
I put a call into both her Neurologists today. One to update them on how things are going & discuss the follow up appointment. And the other to see if his staff would be willing to come to the nursing home & do a mini information session on FTD/Pick's. I had heard from a friend (Thanks Sue!) we met at Mayo that they had done something similar when their son moved into his care home. I think it would be so helpful for the staff to understand this disease. It is similar to the Alzheimers patients they are used to... but yet so different.
Being this far away is so difficult... after spending so much time with her over the past year. I can now understand how Toby & Tracy have felt... being far away and not able to help. I just want to pack our things up & move North! ~ I know Ryan will be moving there on Friday. And I am hoping he will be willing to help with this part of her care. Having one of her boys close will be such a comfort to her, I feel like she thinks we have abandoned her. We are lucky that she has so many good friends up there... they have all been so Amazing!! People offer help... but you feel bad taking it because you know they have their lives to live also. But right now, we need them so desperately! And we are so Thankful for their support. How do you Thank someone for giving in that way??... it is the true meaning of friendship & compassion!!! Cathy is truly blessed with good friends!
Pictures
I wanted to share some pictures that Jean took this week. They are from Thursday - Saturday of this week. Unfortunately my computer & I are having a disagreement... it won't let me open the Kodak picture CD... so I scanned the picture sheet for now... which I know is hard to view, but I wanted you to all see Cathy's Smile!!! Once I get things figured out I will update this post & put on clearer pictures!
Pictures include Cathy, Jean , Barb S. (in green) , Brad, & I.
Pictures include Cathy, Jean , Barb S. (in green) , Brad, & I.
Sunday, February 3, 2008
FTD/Pick's Article
This article was posted on the FTD support site. It is about a former Texas A&M Athletic director who has FTD/Pick's Disease. Just wanted to share it with you... Spreading Awareness!
http://caller.com/news/2008/feb/01/an-honor-long-overdue/
http://caller.com/news/2008/feb/01/an-honor-long-overdue/
Friday, February 1, 2008
Home
Tonight I heard a sound & looked down the hallway... I was expecting to see Cathy peak out of her bedroom, wave & smile, & then close her door... & then I remembered she isn't here.
We came home from Wisconsin today without Cath. We both know that it is for the best... she is in a safe place... but it was hard to say Good Bye. She has been such a big part of our lives... especially over the past 9 months. It made it easier leaving her knowing that she is adjusting well to her new 'home'. Monday... was Terrible. But Tuesday through today she seems to be comfortable there. She knows exactly where things are already... she gets her own coffee (lots of it!), empties her own trash, hugs & kisses the staff, sneaks cookies out of the kitchen in the special care unit she is in, pats the shoulders of the other residents as she walks by & smiles, and she even made a necklace during activity time!
Yesterday she was moved into a private room & Lori (one of the social workers) laughed when she told us the story. They showed Cathy the room they would be moving her to later that day... & before they were even ready to move her Cathy had her stuff packed up and was pushing the cart to her new room... she is fast & sneaky! :) She seems happy & content in her new room. She keeps the door shut but is constantly opening it, waving at people, & then closing it again. She is so happy to have her 'new' TV also... watching DVD's has become a habit again. (we are getting her headphones per the administrators request... to keep the noise level low in the special care unit... but luckily they will let her keep her TV, she would have been so restless without it) While we visit she is constantly on the move... just like home. But I can tell that some things are good for her: having the same routine everyday (which we didn't have at home with the kids schedules), a quiet atmosphere (note kids again), being in a place that she isn't constantly being told 'no' because she is doing something unsafe, & having her own space.
She is still mad at Gayle... we had thought about trying to bring him in with us... but yesterday they extended her 'respite' stay, due to her behavior on Monday the administrator is still nervous that she will lash out at someone (??note that she has been happy since Monday, & who wouldn't be pissed off... 53 and moving into a nursing home when you don't think you are sick! But... we do realize they have to protect the residents that are already there), so it is still not permanent, but the staff seems to be comfortable with her & the social workers are both hopeful. We will have to keep Gayle away a bit longer... hopefully her anger will pass in time as she progresses with the illness... Today she thought she saw him drive by past her window & she started shaking her fist & saying, "Gayle, On Fire!" again... but she settled down easily and her anger is only focused at him.
We took Misty, her dog, in to see her on Wednesday. Poor Misty was so nervous, her hind legs were shaking when we went in. It was a long walk down the 3 halls to see Cathy & the residents we met on the way Loved petting Misty. Once we got to the room Cathy smothered her with kisses. But then she seemed to forget about her & sink back into her DVD. At times she would remember Misty was with us & love her up a bit... but then forget about her again. We joke about Misty needing doggy therapy... but we really do think she senses what is going on. That night she snuck into our room & slept on my feet!
Jean got into town yesterday & stopped in to see her right away. She also stopped by this morning when we were saying our Good Byes to her. (Thanks John for letting her fly North to visit... too bad she couldn't have brought some warmer weather with her!) "Friends Forever!" ~is what they used to say to each other
It makes it hard leaving knowing that Gayle can't stop to visit her. Luckily we know she has good friends in town who will visit her... friends like Jean, Barb S. & Barb H. And we found out this past week that her youngest son Ryan is moving up to Wisconsin a week from today with his family. It will be hard for us not to see her everyday... but it is comforting knowing that she is Loved & will not be alone. And just getting to know the staff this week helped also... they are good with her & so caring. Thank You to everyone who has helped out this past week!!!
We celebrated Brad's Birthday with her on Thursday... we took in cake & ice cream. I picked up a card for her to give him... she signed it "Cathy Handly" instead of "Mom". It was a rough day for Brad. But it probably would have been harder if we would have been home & he wouldn't have been able to see her. At least we were able to be with her.
So... today we came home. We missed our kiddos like crazy! They were glad to have us home. They want to go see Grandma & had lots of questions. Chase asked, "Is Grandma happy?" and "Does Grandma have friends there?" And Mia said, "What are their names?"
I will still try to keep the blog up to date with things. But since we won't be with her everyday it will be less frequent.
When people ask, "What can we do to help?" Our answer is this: If you are far away please send her a card... just a card signed with your name, maybe put some pictures inside... she loves pictures! (You can mail them to Gayle & he will take mail in to the front desk to be delivered to her) If you are near, please stop & visit, a short 10 minute visit means as much as a long visit. (Actually the longer you stay the more restless she seems to get) She Loves Diet Coke, sweets, & hugs! ~ No flowers please... they are afraid some of the other residents may eat them or the dirt they are in...
We came home from Wisconsin today without Cath. We both know that it is for the best... she is in a safe place... but it was hard to say Good Bye. She has been such a big part of our lives... especially over the past 9 months. It made it easier leaving her knowing that she is adjusting well to her new 'home'. Monday... was Terrible. But Tuesday through today she seems to be comfortable there. She knows exactly where things are already... she gets her own coffee (lots of it!), empties her own trash, hugs & kisses the staff, sneaks cookies out of the kitchen in the special care unit she is in, pats the shoulders of the other residents as she walks by & smiles, and she even made a necklace during activity time!
Yesterday she was moved into a private room & Lori (one of the social workers) laughed when she told us the story. They showed Cathy the room they would be moving her to later that day... & before they were even ready to move her Cathy had her stuff packed up and was pushing the cart to her new room... she is fast & sneaky! :) She seems happy & content in her new room. She keeps the door shut but is constantly opening it, waving at people, & then closing it again. She is so happy to have her 'new' TV also... watching DVD's has become a habit again. (we are getting her headphones per the administrators request... to keep the noise level low in the special care unit... but luckily they will let her keep her TV, she would have been so restless without it) While we visit she is constantly on the move... just like home. But I can tell that some things are good for her: having the same routine everyday (which we didn't have at home with the kids schedules), a quiet atmosphere (note kids again), being in a place that she isn't constantly being told 'no' because she is doing something unsafe, & having her own space.
She is still mad at Gayle... we had thought about trying to bring him in with us... but yesterday they extended her 'respite' stay, due to her behavior on Monday the administrator is still nervous that she will lash out at someone (??note that she has been happy since Monday, & who wouldn't be pissed off... 53 and moving into a nursing home when you don't think you are sick! But... we do realize they have to protect the residents that are already there), so it is still not permanent, but the staff seems to be comfortable with her & the social workers are both hopeful. We will have to keep Gayle away a bit longer... hopefully her anger will pass in time as she progresses with the illness... Today she thought she saw him drive by past her window & she started shaking her fist & saying, "Gayle, On Fire!" again... but she settled down easily and her anger is only focused at him.
We took Misty, her dog, in to see her on Wednesday. Poor Misty was so nervous, her hind legs were shaking when we went in. It was a long walk down the 3 halls to see Cathy & the residents we met on the way Loved petting Misty. Once we got to the room Cathy smothered her with kisses. But then she seemed to forget about her & sink back into her DVD. At times she would remember Misty was with us & love her up a bit... but then forget about her again. We joke about Misty needing doggy therapy... but we really do think she senses what is going on. That night she snuck into our room & slept on my feet!
Jean got into town yesterday & stopped in to see her right away. She also stopped by this morning when we were saying our Good Byes to her. (Thanks John for letting her fly North to visit... too bad she couldn't have brought some warmer weather with her!) "Friends Forever!" ~is what they used to say to each other
It makes it hard leaving knowing that Gayle can't stop to visit her. Luckily we know she has good friends in town who will visit her... friends like Jean, Barb S. & Barb H. And we found out this past week that her youngest son Ryan is moving up to Wisconsin a week from today with his family. It will be hard for us not to see her everyday... but it is comforting knowing that she is Loved & will not be alone. And just getting to know the staff this week helped also... they are good with her & so caring. Thank You to everyone who has helped out this past week!!!
We celebrated Brad's Birthday with her on Thursday... we took in cake & ice cream. I picked up a card for her to give him... she signed it "Cathy Handly" instead of "Mom". It was a rough day for Brad. But it probably would have been harder if we would have been home & he wouldn't have been able to see her. At least we were able to be with her.
So... today we came home. We missed our kiddos like crazy! They were glad to have us home. They want to go see Grandma & had lots of questions. Chase asked, "Is Grandma happy?" and "Does Grandma have friends there?" And Mia said, "What are their names?"
I will still try to keep the blog up to date with things. But since we won't be with her everyday it will be less frequent.
When people ask, "What can we do to help?" Our answer is this: If you are far away please send her a card... just a card signed with your name, maybe put some pictures inside... she loves pictures! (You can mail them to Gayle & he will take mail in to the front desk to be delivered to her) If you are near, please stop & visit, a short 10 minute visit means as much as a long visit. (Actually the longer you stay the more restless she seems to get) She Loves Diet Coke, sweets, & hugs! ~ No flowers please... they are afraid some of the other residents may eat them or the dirt they are in...
Subscribe to:
Posts (Atom)