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The good days
greg49
Posted: Monday, September 14, 2015 4:24 PM
Joined: 8/8/2015
Posts: 254


It's so easy to post when you need to vent about bad days or need some information. Please believe me; I'm not trying to throw this in anyone's face who is having a bad day. I just need to acknowledge how we've had a couple few good days in a row. I'm talking about things like.... mom was walking pretty good today by herself some and with someone beside her other times. Dad, mom and I took off down the road to shop for some fresh sweet corn, also picked up a couple roma tomatoes and a few peaches. Mom did a good bit of talking. She seemed pretty content most of the time. I got her to smile a lot. Today for lunch we had salmon, green beans, salad and toast and mom ate everything on her plate. I told her how I like the glasses we were using because they have a peculiar, slightly rounded shape and I remember them from about 40 years ago when I was a child. She said, "Oh, really? I've probably skipped past another dozen good things, but those are the ones that came right to mind. Thank God for the good days, I'm re-energized and ready for whatever.
The_Sun_Still_Rises
Posted: Monday, September 14, 2015 4:48 PM
Joined: 7/24/2015
Posts: 3020


Awww...I love hearing about stuff like that. Thank you so much for posting it. I hope I remain pretty happy like that...and a joy for my daughter like your mom is for you.

Bless you for sharing this.


Veterans kid
Posted: Monday, September 14, 2015 5:03 PM
Joined: 10/17/2014
Posts: 1239


Absolutely! I has posted a while back about a good day at the park with my dad, and some of the replies were like thanks! Good to hear!
I agree, this is great to learn and vent, but also to share the funny stories and good days 😀😎

Michael Ellenbogen
Posted: Monday, September 14, 2015 5:11 PM
Joined: 11/30/2011
Posts: 3630


It is so strange on how this disease is. It is so nice to know there may be good times. I hope you record those moments.


Veterans kid
Posted: Monday, September 14, 2015 5:17 PM
Joined: 10/17/2014
Posts: 1239


I do. A lot of them., and take a lot of pictures!
Every night when I get dad in bed, as I'm pulling up his covers the way he likes, he will tell me "good night. Don't let the bugs bite. Bite 'me back". Or send them to me!
Lol! I love it! I have a couple of those recorded. I treasure these ❤️❤️


Veterans kid
Posted: Monday, September 14, 2015 5:25 PM
Joined: 10/17/2014
Posts: 1239


This week is national adult services week and every day is a different theme. Today he came home work a top hat, trophy and a certificate for being the most charming!
Thursday is 50's day. I had an idea and dad's all for it. Going to have him wear a t-shirt with the sleeves rolled up ( minus the pack of ciggs) jeans and his fake leather jacket .
He likes to do things like that. Halloween he went dressed as a vampire. He was so cute! The other clients and the staff loved it too! With his white hair and the cape, his bus driver and I jokes he looked like the godfather of vampires
I've got to start thinking of costume for this year 🎃👻

The_Sun_Still_Rises
Posted: Monday, September 14, 2015 5:32 PM
Joined: 7/24/2015
Posts: 3020


Oh fun. I love to hear this stuff, please keep it coming.

So often with the doom and gloom, it can leave me feeling very scared for my future...and stories like these feel me with warmth and hope and joy and love and good feelings about my future. And about life with Alz.

Thank you, thank you, thank you.


RachelO
Posted: Monday, September 14, 2015 6:00 PM
Joined: 6/22/2015
Posts: 324


I treasure an evening I had last summer when I cooked chicken sausages and salad for my mother and her boyfriend and we sat on the rooftop deck of her building and the sun was setting and the wind was blowing and we drank some beer and boyfriend and I talked and my mother smiled and nodded and participated and it was really nice. I would love to have another evening like that. Recently it gave me great pleasure just to see her toes tapping to Linda ronstadt "when will I be loved?"
Veterans kid
Posted: Monday, September 14, 2015 7:05 PM
Joined: 10/17/2014
Posts: 1239


Awwww Rachel! What an awesome evening!
Now I have that song stuck in my head! 😄
I goggled easy costume for seniors and found a couple dad and i really like.
One is to take an old pair of pants/sweats and glue "smarties" candies to them... Smartie pants!
The other one a party hat and horn and carry a box of Life cereal...Life of the party!
These are great! Easy, inexpensive and most of all, easy for him to wear. They wouldn't have to be taken off for bathroom, and no mask.


Maggs
Posted: Monday, September 14, 2015 11:41 PM
Joined: 5/22/2012
Posts: 786


Veterans Kid
May I just say you and your Dad look adorable in this photo, as you did in your last. 😊

And I'm pretty impressed you are thinking about Halloween costumes already!

Maggs

tos
Posted: Tuesday, September 15, 2015 1:29 AM
Joined: 6/4/2015
Posts: 348


I agree with what Maggs said, Veteran's Kid. And I can't believe your dad is 84 years old. He looks much younger to me and you look very young as well.

------

Re: the good days - we have a lot of good days with my mom. She is so darn funny and the amazing thing is this: she's probably happier than I've ever seen her in my life. It's amazing yet sad because I realize that her happiness probably comes, in part, from no longer having the ability to worry (which is a good thing) but not having the ability to worry = dementia. I'm not sure if that makes sense but my mom was always such a worrier that I wish she could have had some of this happiness when she was younger.



greg49
Posted: Tuesday, September 15, 2015 4:19 AM
Joined: 8/8/2015
Posts: 254


Oh, yeah, tos, I understand. I really started thinking about the positives that may come along with dementia when mom was set up for an upper G.I. Dad, my wife, and I all were apprehensive and worried. Mom wasn't. Can lacking a memory bank ever be good? It turns out, yes, sometimes it is.

Then there is a bigger payout for me. Any religious, sociological barriers life had put up between my mother and her long haired, tie-dyed, neo-hippie son are now lifted, as surely as Moses lifted and swayed the waters to the sides in the parting of the seas.
We are forced to take the bad with dementia. You better believe I WILL appreciate anything that, for whatever reason, brings me closer to my parents when time is....limited. "Come hell or high water", we're gonna make things work. That cliche was for mom. She loved cliches and that one I particularly remember because she would say, "My mom used to say that", with a little nervous laughter, explaining the use of a curse word....hehehehe.

tos
Posted: Tuesday, September 15, 2015 4:45 AM
Joined: 6/4/2015
Posts: 348


Greg said: "She loved cliches and that one I particularly remember because she would say, "My mom used to say that", with a little nervous laughter, explaining the use of a curse word....hehehehe."

~~~~~~

Ha ha . . . I had to read the part copied and pasted (above) twice. I guess it slipped my mind that hell is curse word versus a place.

Re: good days, cont. - the other day my mom overheard an altercation between two other residents and in her confusion she became very concerned that I was being pulled into it. She has so much trouble finding her words but in that moment the message came out loud and clear: "don't you dare involve my daughter because if you do, I'll call the sheriff!"

That was a good day because I realized that I'm really blessed that she still knows who I am (and she's blessed as well for still knowing family members) and I'm doubly blessed because she's still protective of me, even at our ages (hers AND mine).

So yep, I'm happy to embrace as much good as I can get where this disease is concerned!

(Good thread and glad you're back)

lostKeez
Posted: Tuesday, September 15, 2015 5:41 AM
Joined: 12/2/2014
Posts: 141


I think it's a great idea to bring up the good days and memories! Thanks certainly, this disease is riddled with strife, but there are moments, those moments we will be able to treasure later. For me, oddly, this disease has repaired the damaged relationship that has existed between my mom and myself. My moms guard is down more and she is not as difficult with me as she has been my entire life when I could seem to do nothing right. The other day she told my brother that I was " her daughter and her best friend". It still brings a tear to my eye. She has never said anything like that before and I will not forget it. There are many things that are lost, but in our case, the relationship was "found". Praying it stays for at least a while
greg49
Posted: Tuesday, September 15, 2015 10:47 AM
Joined: 8/8/2015
Posts: 254


I'm having a really interesting day with mom. Dad is gone for most of the day taking care of some business. So it's just mom and I. Right now I'm playing her some Gaither music while she naps.(and I check on her about every 2 minutes. If she wakes up and can't find anyone, that's when she gets curious and might start into the idea of going some place. Reminds me of something... Oh yeah, when my kids were small, you turn your head in a shopping center and they're gone.... behind the next aisle.


So rest of the day's plans- pizza and corn on the cob for lunch. After lunch, I'm gonna request a piano performance. It's been a month since we did this; my fingers are crossed that she can still do it. Then other things we may do; read her something, out of the bible or magazine or old books in the bookshelf. Maybe break out the photo albums. Maybe go outdoors to enjoy this beautiful day. Maybe watch some TV, although we did this for awhile this morning. Mom seemed to enjoy the game show channel. We watched the $25,000 Pyramid, Press Your Luck and Card Sharks. The 25k Pyramid used to be one of her favorites. It did not ring a bell, but she enjoyed it and I believe it was somewhat a mental exercise for her. It still hurts a little when she doesn't recognize old favorites, but that's life with dementia.


The_Sun_Still_Rises
Posted: Tuesday, September 15, 2015 11:42 AM
Joined: 7/24/2015
Posts: 3020


The baby's first interest in TV was Wheel of Fortune with my mom. I think that is because the way the hosts talk to you so excitedly.

Repaired relationship with my mom too. I was never my mom's favorite child, but I was the only one who would help her. While she is glad to be in her home, she never seemed glad I was here. But slowly over the last few years, we have become close. The last time she went to the ER, she reached out and held my hand. Killed my arm for all the hours this went on, but I wouldn't have had it any other way. Now that we have taken over all her bills...now she says thank you and thinks I am so nice. If I had known that was the ticket, we would have taken them on years ago.

My mom is super sweet overall. I love spending this time with her. Occassionally, I get a little envious of people who get to take vacations...but given the choice, I wouldn't be anywhere else but right by my mom's side.


Bonus
Posted: Tuesday, September 15, 2015 12:28 PM
Joined: 1/27/2014
Posts: 242


I have two really good times to share - about 6 months ago, I brought my mom a small bag of snickers minis. She immediately put them in her bureau drawer because she was afraid the staff would take them. The next time I came, I checked her drawer to see if they were still there. I had planned to offer them again if they were. She saw me looking for them and said, "I may forget a lot of things, but snickers isn't one of them!"

Mom lives in a NH and really doesn't understand why. She always asks how long she has to stay there. She has delusions and some paranoia so visits are typically spent redirecting her to other subjects so she doesn't get upset.

This past Sunday, I took her for a walk outside and it was so beautiful out. There was a nice breeze and the temps weren't too hot. Mom looked at me and said "I can't tell you how much I appreciate this, especially letting me feel the breeze in my hair."

Something so simple made her so happy, it was an awesome gift for both of us!

Logan
Posted: Tuesday, September 15, 2015 12:34 PM
Joined: 12/16/2011
Posts: 204


Greg49, thanks so much for starting this thread! It is good ( and beneficial) to bring up the good days or even just those fleeting moments which are happy ones. I believe these are gifts to treasure .

Even though my mother is bedbound and has been for the past 14 months, we still manage to have REALLY good moments (even multiple moments in the course of a day) or whole days where we laugh and share warm companionship. So glad I will be able to have these wonderful, warm memories to offset the difficult ones when my mom is no longer physically with us.

Logan


RachelO
Posted: Tuesday, September 15, 2015 12:46 PM
Joined: 6/22/2015
Posts: 324


My mother is also someone who used to be a worrier and let it all go as she came down with dementia. She has become a different person in some ways and I have gotten to have a whole new relationship with her that has been a great blessing. I am thankful for that. And I would agree that for her she has had some very happy times and years even during the dementia. And even right now in the memory care and with late stage problems she is still smiling and enjoying small pleasures.

Here is a little nice: my sister called me today and said last night at dinnertime everyone was agitated in the memory unit and one lady was fiddling with her skin and the other lady was telling her to stop it and they were all getting in a snit. And the staff put on the CD that I made for them that leads off with "Forever in blue Jeans" by Neil Diamond and then goes on into the bluegrass and they all started dancing (some chair dancing) and everyone calmed down and then they ate their dinner. I am pleased my CD has turned into the picker upper remedy of choice! And it sounds like it regularly induces dancing!


stedyfred
Posted: Tuesday, September 15, 2015 1:16 PM
Joined: 9/21/2012
Posts: 479


I'm glad Greg that you and mom are having a real good day together; thanks for sharing and best wishes for many more in the near future. Good luck and take care.
Lwinters
Posted: Tuesday, September 15, 2015 1:57 PM
Joined: 5/21/2015
Posts: 144


This is a wonderful thread. Last night was the season debut of Dancing with the Stars. I'm not much of a TV person but I put it on for my Mom and she cheered and applauded for the performers like she was actually there! I hadn't seen her that excited and happy in a while. It was great.
Veterans kid
Posted: Tuesday, September 15, 2015 5:02 PM
Joined: 10/17/2014
Posts: 1239


Maggs and tos- thank you! A lot of people say he doesn't look his age. He's a cutie!
😄


sandyjm
Posted: Tuesday, September 15, 2015 11:27 PM
Joined: 4/25/2015
Posts: 406


Thanks for this great thread. I love reading all your "good" stories and it's a great reminder for me to appreciate the moments. I'm still getting lost in other emotions ...so I needed this reminder.

One of the things I miss most is my Mom's smile and laughter..always the life of the party and the one telling all the jokes....
The other day I had hurt my back and was laying down icing it. She, still loving being the caregiver herself came into check on me. And wanting to cheer me up started singing a song , doing a little dance, and GIGGLING ! It was great !
I have not done anything with music therapy but that is now on my list...make a little Playlist of music she'd like and we can dance together to it...can't wait to see/ hear the giggle again.

Thanks everyone....you lifted my spirits !

tos
Posted: Wednesday, September 16, 2015 1:35 AM
Joined: 6/4/2015
Posts: 348


We saw my mom twice today. Both times she was wearing a cowboy-style straw hat with an Hawaiian cloth band. I didn't recognize her when we first walked in (it was a rather large on her head and obscured her face). She went on and on, in a good way, about that hat (I think they gave them out during an activity). Additionally, she was so fascinated by the clouds and kept mentioning them every time she would look toward the windows. A very encouraging day with little to no word salad. We've seen such a positive change in her since we had her taken off the Megace (appetite stimulant).
greg49
Posted: Wednesday, September 16, 2015 2:59 AM
Joined: 8/8/2015
Posts: 254


That's really cool your mom having a good day and noticing the clouds, tos. I took mom out for a ride because it was such a beautiful day. I noticed, myself, that the sky was completely blue when we started out. Then, by the time we got back, small little puffs of clouds had moved in from the west. We sat outside and I pointed out jet-airplane trails and the clouds. It was unusually clear.
tos
Posted: Wednesday, September 16, 2015 3:20 AM
Joined: 6/4/2015
Posts: 348


It's really great that your mom can still go out for car rides. Enjoy that for as long as you possibly can, or better put - for as long as she is able to put on her bonnet and go (now there's an old cliche).

When we moved my mom out here I was told repeatedly (by the head of nursing at her facility in the Midwest) that she was still ambulatory. She was not. Now she is confined to a wheelchair and is a two-person assist, and when I say a two-person assist I mean two people (aides) who know what they're doing. Transfers are hard for her, even with two able-bodied aides

I'd like to figure out a way to bring her to our house (she's never been here). The problem is all tied up with getting a wheelchair van and also with not wanting to disturb her qi too much. She did get to go to In and Out (hamburger chain) in the facility's wheelchair van and apparently she and her compadres had a grand old time.

Did you end up getting the piano performance?



greg49
Posted: Wednesday, September 16, 2015 4:50 AM
Joined: 8/8/2015
Posts: 254


Thank you for asking on the piano playing. I didn't get around to it. It was kind of a strange day, because of dad being gone and she seemed so tired by mid afternoon (she went to lay down for a nap, I helped her in bed, but then 5 minutes later she strolls back in to the family room) that I decided to wait. I'm gonna try again today. I'm also glad you shared about your mom's condition. It's time for me to face whatever is coming.
greg49
Posted: Wednesday, September 16, 2015 9:54 AM
Joined: 8/8/2015
Posts: 254


Ok, nobody look at me. I'm a 50 year old man and I'm wiping tears from my eyes. YES, she can STILL play the piano. The songbook was open to "The First Noel". Who cares it's summer? Then went on to "What Child is This", then "Go Tell it on the Mountain". Then she finished with "Turn Your Radio On", and encore, "He Touched Me". OMG, am I going religious? Hehe. I sang with her and she started singing too on "He Touched Me"......"Shackled by a heavy burden, 'Neath a load of guilt and shame; Then the hand of Jesus touched me, And now I am no longer the same. He touched me, Oh, He touched me, and the joy that floods my soul; Something happened, and Now I know. He touched me and made me whole". Wow, we need more activities. I don't see why we shouldn't do this at least once a day. I told her that she was wonderful and amazing and she laughed. I told her how good that made me feel. Of course, she could not do it without the sheet music, but who cares? bout lunch time, I'm gonna treat her to something good.
ghostdog
Posted: Wednesday, September 16, 2015 10:11 AM
Joined: 2/9/2015
Posts: 547


Greg, piano playing is one of the things that my mom still does. When she was in her home, I asked the caregivers to encourage it to the extent they could and mom really started playing a lot (and when she was mad or didn't like someone, she would go on piano strike).

Since we have moved her to MC, it has been really hard to get her to play -- I think it's situational, people applaud and she feels like she's on display, and shouldn't be applauded because the music isn't up to her standards. I'm still working on the logistic, and while the aides are being encouraged to suggest playing, the facility is a little concerned that she is resisting/refusing because she is losing the ability. Me, I don't want to pressure her or force her into activities that are inappropriate, but ....

I don't know if you play. My mom always disliked the way I played (made it pretty hard to practice, since she was always wanting to show me how to do it better her way OR leaving the room in a humpf). So when I can, I harness that into "tricking" her to come to the piano -- I play even more badly than I can, and ask her to show me how, and then she treats us to a real concert.

These days she likes to start at one place in the book and play each song thereafter. It helps to put a post it on places where she likes to start, because she can get frustrated if the first song she opens to is one she doesn't like or which is too complicated.

I hope she'll continue to play. We have music all the way back to beginner level so maybe we can grade down the music as necessary. Her sight reading is amazing (I'm told sight reading is muscle memory which is why it may be retained longer). She doesn't hear well so out of tune doesn't bother her, but adjusting to a piano with a different touch (key pressure/feel) has been somewhat difficult.

greg49
Posted: Wednesday, September 16, 2015 2:40 PM
Joined: 8/8/2015
Posts: 254


I don't play, but I can sing along some. Isn't it amazing? The first thing she did was situate her feet to the two pedals. It was sometimes slow, and once in a while she hit a wrong note and acknowledged it with a nervous laugh, but I don't think it gets any better than this. That old piano sounded like music from heaven.
RachelO
Posted: Wednesday, September 16, 2015 2:51 PM
Joined: 6/22/2015
Posts: 324


Super nice to hear and great therapy for your mom cognitive, dexterity, recreational, yes every day why not? Cool !!!
tos
Posted: Thursday, September 17, 2015 2:01 AM
Joined: 6/4/2015
Posts: 348


Greg, can you take a little video (with audio) of her playing? It may be something you'll want to have to look back on one of these days.



greg49
Posted: Thursday, September 17, 2015 3:50 AM
Joined: 8/8/2015
Posts: 254


Excellent idea on the video. I'm sorta between smartphones, but I might as well try the video on my $20 tracphone. I do have a small performance in mind. Her brother and his wife will be visiting Monday. The last time we met, my aunt acted like she had slid downhill like she was falling off a cliff. I still can't quite understand the little dog-and-pony-show that went on, culminating with her talking like (not in front of her, that would have a one-time mistake on her part, you bet your bottom dollar) she was already dead. It seems contrived, as they meet about every 6 weeks. Why, don't know. I said, "Awww, we don't sit around crying. There isn't any time for that anymore. We make the best of the situation. There is plenty to be thankful for (not even a stretch of the truth, that's the reality of our focus). So, they will be traveling from 3 and 1/2 hours away, I'll let them visit for a bit, then take mom back to the living room and get her sat down at the piano. Then, when she starts, I'm going to get dad, uncle and aunt and then rejoin mom at the piano chair, and help her sing along. When I started singing yesterday, mom joined in with me. I'm astounded at the multitasking that mom can do, pedals, left hand, right hand, rhythm, near perfect pitch...... WOW. I'm not trying to as much prove a point, but more to show how positiveness works. I will not stand for any pity-party when talking about my mother; not before she passes on. I'm terrified at the thought of dealing with a funeral (hopefully in about 2018, I hate to predict this stuff, but I can't escape the fact that stage 7 has a documented time frame, whether it ends up the minimum or the maximum). I know one thing, there will be quite a few people attending, and if I can't keep my composure, I won't stay. Ok, heck with the future. It's about enjoying the moment and exploring ways to improve the day. I can't sleep, but I have to be up in 2 hours anyway, to get dad and mom to take to a doctor appointment. Afterwards, we're going to go out for breakfast, then back to the farm and prepare for the day; hopefully I'll find the time for a nap after lunch. If not, no rest for the weary.
The_Sun_Still_Rises
Posted: Thursday, September 17, 2015 8:47 AM
Joined: 7/24/2015
Posts: 3020


Am wiping tears right along with you! That is so beautiful!!!

My mom plays piano every day as part of her routine, she cannot play like she used to, but likes to do it to keep her mind going. We had to get her a rolling walker, so it would have a high enough seat and arms to help her get back up. It was a joy to discover that this is what had kept her from playing for years (not being able to get back up off the bench).

I love this thread...thanks everyone for the beautiful stories. It makes me much more hopeful for my future. *wipes tear*


greg49
Posted: Friday, September 18, 2015 12:17 AM
Joined: 8/8/2015
Posts: 254


I'm thinking about buying some piano sheet music for a few songs from my generation. If it works easily, I'll continue. If it upset mom or confuses her, I'll immediately discontinue and go back to hymns. It might help me understand how her brain is so damaged, but she can still play the piano like its magic.
I have a near to photographic memory and I know that an actual photographic memory rarely ever exists. Some smart guy ran some experiments a few years back. He had chess players memorize chess pieces as they would have sat in the middle of the game. Then he had them recreate the configuration from memory. Many were successful. However, he then further tested them by placing the chess pieces in a manner that would be impossible, given the rules of chess piece movement. They were all but unable to recreate the impossible scenarios. So the premise is that we memorize stuff that makes sense to our brains, but when it didn't make sense to the brain, the recall was substandard. Hmmmmmm. If she could play a new piece, like "Stand By Me", the one I have in mind; well then I think I could somewhat understand how her memory is working. Does she remember melodies? Yeah, ok, I'm playing around here, but it's all fun and games if she doesn't get hurt.

 
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