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MICHELE142's Photo MICHELE142 SparkPoints: (109,493)
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10/23/14 10:18 A

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Morning, nice an chilly this morning with more emoticon turning or adding to the leaves on the ground. Even though I did not get everything accomplished till 3 this morning I did get 6 sound hours of sleep last night or should I say this morning. Sure want a better day today!
have a good day as well, will try and pop in later. Michele



Michele - Northern Kentucky


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10/23/14 9:22 A

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Thanks, Irene, for helping me out and putting me on Dementia Aware! I feel so Computer Challenged. I'm glad to have all the information I can get.

Now I have to tear myself away from this machine and make breakfast for Allan. He needs to eat something when he takes his pills, otherwise he gets an awful bellyache from the great big Potassium pills he has to have.

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10/23/14 3:27 A

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Me again, I added Laura to Dementia Aware on face book a very good group for patients and carers , do look for it or tell me your name if you want to look at it and are on face book Irene

Irene in Nottinghamshire UK
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10/23/14 2:31 A

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Hi in Thursday Facebook can be a good thing for sommunucation and information . Hope you find Dementia Aware group, I will look if I can add you, it's on my list of teams if you can get that info. The funny videos are fantastic for our men folk,M loves any involving cute pets or little children . Our loved ones have simple sense of humour now , I have put M on an old I pad now and asked family and friends to send him funny videos on it. So he can get them direct , he needs something to do as his art isn't working now he gets frustrated he can't get the effects he wants so gives up. So we start another day , or I do, Thursday am in
England . Irene

Irene in Nottinghamshire UK
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10/22/14 10:54 P

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Laura ..... Ketosis is not something you want to deal with. The founder of Adkins found out the hard way concerning heart and kidney problems. Friends of mine that were on Adkins stopped the diet when his problems were made public. I was glad when they did stop! .........Once told you have pre-diabetes, eventually you do find yourself with Diabetes. That is unless you have that transplant which is not cheap.

Irene ..... Enjoyed the Birthday video and so did Robert. He was laughing when she tore into that wrapping and teary eyed with the surprise. That would make a great blog for you to post on Spark. Robert and I have watched it several times today along with two of the Nurses at Chemo-therapy today. He even had me show it to two others getting chemo. Thanks, Robert seldon smiles these days but, today he has.

Enjoy what is left of this week and Blessings to every one! Michele

Michele - Northern Kentucky


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10/22/14 8:40 P

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It's Allan who has low level diabetes, low end of the A1c scale. I was pre-diabetic, then reduced my A1c to 5.2. That was good, but with all the stress my A1c has been rising, and I've been gaining weight. My A1c may be pre-diabetic again for all I know. I will be seeing the doctor next month and I'll have the blood test and find out.

We haven't been dealing with Ketones. No doctor has talked with us about that. I don't know if this is something we have to deal with yet or not.

People on the Atkins diet were getting those strips and testing for Ketosis. If they were in Ketosis they were happy because it meant that the diet was working, so they were told. My Favorite Family Member was on that diet, and when I said I was concerned that he was actually trying to get Ketosis, he said that he was trying to get Ketoacidosis and that was okay.

What do I know? Ketosis, Ketoacidosis, neither one sounds too good.

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10/22/14 8:30 P

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Good. It looks now like we're all hooked up on Facebook. And now I need to find that good Alzheimer's site there, where the current posts are.

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10/22/14 2:00 A

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Yes thank you Maurice is improving on anti biotics and not as confused as he was, I can usually tell in a morning how the day will be. He slept in a bit later today which is unusual . Then got up to go the bathroom and then just stood in the bedroom waiting for me to tell him what to do next. I reminded him to pull a pair of leisure wear pants on and go and make tea. So it's a sign of a forgetful but calm day, I hope.
As you can't find or add me on Facebook I will try looking for you, can you tell me your full names please . Thanks , I do fine groups on Facebook most helpful. Irene

Irene in Nottinghamshire UK
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10/21/14 10:33 P

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Isn't ole Sweet or is it you that's Diabetic? Diabetics can get those strips for Ketones in the urine. A few of the brands for those strip do test for other things along with Ketones. My self I'll test for ketones if my blood sugar goes over 250. Need script, then again some Pharmacies around here will let you have them if you get your diabetic medicines from them without a script. An early thing to watch for is a low--grade temp in the evening, Temp below 100 for urine and kidney infections.

I'm not finding Irene on fb however, I've not looked for her on my cell phone as yet!

Have a better day tomorrow. ..... Michele

Michele - Northern Kentucky


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10/21/14 10:00 P

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Hello, Michele...our weather was on and off, rain and no rain and intermittent sun, and then rain again. I'll need a good dry day soon so that I can get the leaves raked.

This is not a big property. My first house in State College PA had/has these great big oak trees and hickory trees. Very lovely but very messy, lots and lots of leaves together with dead wood and acorns and hickory nuts. Then I had the farmhouse south of Ithaca NY for 16 years, and I had to mow the grass for four hours. Didn't have leaf raking to do, but mowing grass was a real chore.

Now I have enough grass that it's green and pretty around the house, but I can get it done in 20 minutes or so. And I have enough trees that it's really nice, but I can rake the leaves without much difficulty.

The only really irritating nuisance are the crabapple trees. Those crabapples are a mess sometimes. Last summer there weren't many and it wasn't a problem, but this year the things were a mess.

Still it's a small enough property that I can manage fairly well.

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10/21/14 9:54 P

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A urinary tract infection, Irene? This is something I've been learning about at the Alzheimer's Reading Room! I'd never known that a UTI can worsen dementia. It was news to me. But apparently infections are harmful to people with Alzheimer's and can worsen the dementia.

This is something I want to talk about with my daughter. I've had these miserable infections from time to time since I was in my late 20's. It hurts, it's so miserable, and I can tell when such an infection is happening. It comes on quickly, and I go "Uh-oh, here it comes, I'm in trouble, I have to hurry to the Urgent Care place and get a prescription for medicine."

But an old person with dementia may not be able to tell us what is happening. It's up to the caregivers to pay attention and take care of business.

It's easy to diagnose these infections. I pee in the cup and the nurse sticks a strip of paper in it. What color the paper turns tells the nurse what's going on.

I'd like to know if it's possible to get hold of those little paper strips so as to be able to check on our loved ones at home instead of dragging them to the doctor to see if anything his happening.

If I get Alzheimer's like my grandmother I will need my daughter to advocate for me and tell the nurses to check me and see if I have such an infection. I may no longer be able to tell anyone what I need.

I sure hope our dear Maurice will be feeling better, and that feeling better will make his life better.

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MICHELE142's Photo MICHELE142 SparkPoints: (109,493)
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10/21/14 11:12 A

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Irene ... looked for you on fb last night and could not find, so will search again tonight. Hope things go well with M's Ipad. I'm finding myself going through the motions daily with robert. Hope though that one day he will get it.

Laura ... are you dry or wet for today's weather? Michele

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10/21/14 1:52 A

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I will look if I can find you Laura , there is usually a place to request a friendship. I had one this week from an unknown person who had almost .1000 friends, I think it's more a collection than real friends as we are,
Dh definitely on a downwards turn but I wasn't happy with his health so got a doctors appointment and he has a UTI which can cause confusion, but doctor did say A often goes in steps downwards not a gentle slope as i thought, but will check more once UTI is cleared.
Look after yourselves friends, I know it's hard, warm wishes Irene

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10/20/14 2:43 P

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Laura...answered your friend request this morning. Will see if I can find Irene as well when things get clamer here. last night was the 4th night not getting any sleep till after 3 in the morning and not waking till around 11. Each time I was about to drift off I heard his lighter click at least every 15 minutes within an hour and a half followed by heavy coughing and very audible congestion. Today I feel very achy and alternating between hot and cold with no energy at all. So far nothing but a low grade temp with no coughing or sneezing. So, now I wait for what I'm coming down with. Hate waiting!

Hope you and Irene are having quieter day than I am. Have a better week as well! Michele

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10/20/14 8:18 A

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Facebook baffles me! Michele, I went to your site and had no problem finding a place to click to send a friend request.

But then I went to your site, Irene, and it is set up differently. There is no place to click, no way to send a friend request. What I found was a place to send a message, but because I'm not a friend that message is being sent to some other folder that you only see when you go to it and look to see if there's anything there.

That was also the case with another woman I wanted to be friends with. It was after a week that she was just checking in that folder, and there I was.

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10/20/14 8:08 A

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Hello, Michele...I'm Laura Johnson in Bellefonte PA. I have no logos or pictures or anything yet. I'd like to put a picture of me up but I don't have any. I'm baffled by these new digital cameras. I used to have a simple old one back in the 1990's, but it died. I could use it. I could make it work. It was simple. But these newfangled contraptions confuse me, and I don't know how to get the picture out of the camera and into the computer and then into some page or site.

Yes, I hear you. This stress is very unhealthy. I feel myself becoming sick from it, and I don't see any real help around at this time.

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10/20/14 1:55 A

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Demnetia aware is very active daily. A wonderful poem on today I how dementia sufferers see things, I wonder if I can add you Maybe we could all became fb friends and then steer each other to things, yeah having common names isn't easy, I am Irene Turner I have a photo on of me sitting in what looks like a bar! It's a hotel,
Yesterday my dil and grandson set up an I pad for Maurice to use, I am not convinced he will but he is enjoying a drawing app where he can draw direct in the screen, dil asked what newspaper does he like. We can add that. I said he doesn't read now. Oh! He agreed words gets jumbled up now, several things they suggested I told them won't work for him. It gave them a shock I think. Oh also grandson jake asked him his birthday . He told him August first but couldn't remember the year only its a long time ago. I told him .also security questions were a problem as he couldn't remember his best friend at school, the address where he lived and many more. He did remember the name of a pet he had as a boy. His memory is going fast now. Have a calm day, Irene

Irene in Nottinghamshire UK
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10/19/14 10:10 P

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Laura ..... what's your city? Check for Michele Sturgil, with a pink cancer ribbon, Campbell County, Kentucky. Give that a try I'll head back to see how many Lauras I can find from PA.
Irene your welcome to as well.

You can also find motion sensitive alarms for beds, not sure about recliners though.I do know that hospitals do use them over a certain age meaning 65 or 67.

There is one thing I know for sure..... I need to find middle ground or complete Balance so I can lower my stress level and continue caregiving, as no one else will do it.

Have a better week than thelast ..... Michele

Michele - Northern Kentucky


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10/19/14 9:08 P

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I've heard about sundowing. I haven't heard of sunupping, but I believe you, Irene. There's a change in light and a change in activity, and I'll bet other caregivers have had to deal with this, whether or not there's information about it.

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10/19/14 8:57 P

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Michele! Stress and pain between your shoulders? No! No! No heart attack for any of us caregivers here, please!

That said, I do wonder if I'm slowly killing myself with caregiving. I don't feel well, and I'm old now.

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10/19/14 8:52 P

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Hello, Michele...yes, I'm a bewildered confused Facebook member who doesn't have a clue how to use the stinkin' thing. I couldn't find you, don't know how.

I could tell you I'm Laura Johnson, but I'll bet that's such a common name you'll find hundreds of us and won't know which of the several thousand to "friend".

Oh jeez! There are people I know from the old form of the internet who are now on Facebook, and now I don't have a clue what on earth to do to interact and be an actual online "group" with them.

I've heard of alarms that go on a door frame. If the person in the room goes through the door frame the alarm goes off. It co7uld be on a bedroom door or on the door to the outside. (Of course if you're sound asleep and the alarm on the door to the outside he'll be heading down the road by the time you shake the sleep out of your head, jump out of bed, grab your robe and go running after him. Better alarms first on the inside doors.)

Oh, Michele...noisy breathing is hard to deal with. I sleep in a separate room and have for many years. (But then Allan and I aren't married, for one thing, and for another, I can't get any sleep next to someone who snorts and honks and coughs and flops around like a fish out of water and sometimes sweats like a water fountain and gets up and turns the light on and walks around and turns night into day. Now the cat is another matter. Our cat snuggles up against me and I stick my face in her soft fur and snorgle with her. When our dear dog was alive, well, it was okay for a while, but then it got to where she was up on the bed and would lean against me and shove my legs out of the bed. Finally she had to sleep on the floor on her Dog Bed next to my bed.)

A great weekend? My best friend and went to a concert at the music building at Penn State and heard this nice young fellow playing Mozart and Beethoven music on a piano of the kind and type that Mozart and Beethoven would have actually used. The pianos we see nowadays with lots of keys and foot pedals didn't exist in Mozart's and Beethoven's day. Those are actually pretty recent, like maybe 150 years ago, at the end of the 19th century. This young man played on a replica of a piano from the late 1700's.

If I'd had the time and had known what the concert would be I'd have dragged Allan out of the house and brought him along. The last time I dragged him along we went to a Choral Society concert, and he really enjoyed the music.

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10/19/14 5:30 P

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Laura ..... Are you already on facebook? If not get on FB, if you are send me a friend request. I'm on have not checked that Page out but will by tonight. One thing I have learned this year ( so far ) is that you can count on one hand the people that are not afraid to help when help is needed.

Laura's right, you need to get those keys from him and have yours where he can not get them as well. If available across the pond, there is an alarm used here for hotel/motel doors to place on the handle. If that door is locked and someone attempts to enter an alarm will go off. I read somewhere in the A literature on Tips for care once they become exploring, to Safety Proof the home as you would for a Toddler. Those that commented had sate results from doing that ... as toddlers do explore.

Not much sleep last night bc of Roberts breathing, so it's Nap Time for me! Have a great weekand hope its better than last week. ..... Michele

Michele - Northern Kentucky


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10/19/14 6:44 A

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Am I missing something? The most recent post on Dementia Aware is July of 2012. Is there more recent activity somewhere?

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10/19/14 6:35 A

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Do I have the correct Facebook page? It looks like Dementia Aware is an organization in Leeds, and I have two somewhat different Facebook pages open right now.

On the one page I see a place to click to send a friend request. Do I need to be a friend to be involved with this group? And on that page I see a link to an article about infections in early life.

On the other page I see a space to post something.

Yes, I do want to be able to read these posts and articles. I take advantage of opportunities to read and learn all I can.

When my grandmother was "senile" there really wasn't any support out there. No internet and no easy access to lots of information. I feel lucky that we now have these resources.

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10/19/14 6:26 A

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Oh Irene! Yes, it would be a very good idea to hide the door keys! The last thing you need is for him to go out and get lost in the dark.

It's so bad when the loved one wakes up and rummages around, and then the caregiver has to get him back to bed. He sleeps, but you don't! Sleep deprivation is just so destructive.

I am going to go look at Facebook and find that group.

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10/19/14 3:11 A

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I had a wonderful few hours yesterday totally relaxing as I knew Maricr was safe at our sons watching football on tv tigether .
I am getting tired as M has started night rambles . He gets dressed and convinced it's time to get up at 1 30 am. So far I have heard him and managed to steer him back to bed . He goes back to sleep but I dont. Reading on Demnetia Aware group of an A mother in law getting up in the night and spray polishing all the furniture with fly spray, trying to be helpful. M hasn't done anything in his night walks only get dressed and sits in his chair wondering why it's so quiet, I am thinking I may hide the door keys in case he starts going out at night ,
No wonder I do not get much sleep , do look up Dementa Aware group on face book, and join. A great input today from a patient who knows he has A and fighting it as much as he can,. Irene

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10/18/14 8:53 P

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Today was totally not my day just one of " the best laid plans of men and mice. " Or perhaps " Murphy's Law "
actually take your pick. The stress and discomfort between my shoulder blades, just to much like last November. However, vitals remained stable and a couple of Tylenol did the trick. Now, just hope I can regroup for tomorrow after a good nights sleep.

Have a Blessed Sunday ..... Michele

Michele - Northern Kentucky


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10/18/14 8:30 P

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Saturday evening and I'm tired now and am going upstairs soon. I've missed posting on this team for a couple of days, and tomorrow morning I want to check in and respond to various things.

I slept late, late for me, that is. It was almost 7:30 in the morning when I woke up. And my daughter was due to come over at 8:30 and we were going to hike/walk and then go into town to see the art museum on the Penn State Campus, and then have lunch downtown. I didn't have much time to get myself awake and give Allan his medicine and change his bandage. Didn't get my morning shower. It's been a disorderly day.

So tomorrow I want to re-read what's been happening and answer your posts.

But now Goodnight.
emoticon

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10/18/14 1:53 A

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Hello on Saturday .yes life is sad And confusing at times . All we can do is our best and not try to be super woman. I am having time out today, I have not told Maurice yet he's going to our sons for a few hours.
It's eariy morning now, that used to be Ms best time. Now it's his worst. Sundowning is usual in A, but he has sun uppers confusion . Not my best time so it's hard to have to steer him round telling him what to do. Have a good weekend Irene

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10/17/14 3:39 P

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It's sad Yes, however its disheartening for me to watch an active self made man, slowly moving back- words in Life. He was informed this past week that his favorite granddaughter and great granddaughters are moving down to his oldest daughters below Louiseville. Leaving now only one granddaughter and her daughter here in Northern Kentucky alone with his two Sons. Actually only the oldest Son who helps me with Robert anytime I or Robert need him.

...... When does a wife let go and let Life take its course...... Michele

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10/17/14 2:52 A

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It is sad to see our loved ones change, I looked up the stages of A, I know everyone is different but I could see many things in stage 6 which relates to Maurice now,
I did have an evening out last night supper with book club friends , great food chat and laughs,
M had been on his own watching tv, he loves tv. But asked me had i seen any sign of a big fire? No, is there one? Oh yes a big one ,saw it on tv. Then I remembered a new serial started last night on tv,
The great fire of London . Set in. 1600s. He's confusing reality and tv now. He had a restless night too , oh dear. Have a calm wekend , .irene

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10/16/14 10:14 P

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Irene.....sorry to hear we both had a confusing day shared between the both of us. Yesterday was Robert's Chemotherapy. Yet, this morning he keep yelling that I was making him late for his Chemotherapy. He kept pointing to the Calendar and yelling he would be late, it took me 30 minutes to prove to him that he had his treatment yesterday. After that he called his Son and told them I would not feed him and he was hungry. Tells me he was not hungry as he had eaten a cookie. It just has me rattled right now as this has never happened before so close together.
So tonight I will be awake trying to figure out what tomorrow will bring. Michele

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10/16/14 2:31 A

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Heloo on Thursday, yesterday I made a choice of leaving several teams on Sparks , I can see changes in Maurice now leading to me looking after him more. I am staying with this team as we understand the situation and know we just have to accept and get on with it,
Yesterday I had to guide him round and remind him of almost everything. I realised he can't deal with money now. He has always had cash on him but now he holds a handful of money out in shops for the seller to take the amount. Not everyone is honest to take just what's owing.
Then last night he got up got dressed and could not be convinced it was 1 30 am
, I managed eventually to steer him back to bed but he went fully dressed, I thought does it matter? No so let him sleep in his clothes, I settled him, then went to the bathroom before I got in bed. Only to see such a mess , I won't go into details but had to clean it up before I could go to bed, so not a good day, it's eariy yet but I can see now he's confused and looks at me blankly when I ask him something , oh dear , think of us friends . Irene

Irene in Nottinghamshire UK
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10/15/14 10:16 P

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Notice this evening that robert's memory is down to happenings in the last week and this morning. Where as before, it has been the last 10 months. However, today was a long Chemo day for the both of us. So will not know till tomorrow if his memory clears.

The 21st of next month will be my 1st anniversary with my Heart Attack. Stress was my biggest problem then as it is now with his diagnosis of Lung Cancer. More Women than Men die within that 1st year. Tai Chi has been a big stress reliever for me plus a nice long walk when it really gets overly stressed around here. Text books about the A and Dementia cover general issues, signs and symptoms, and treatment.which are general. You almost have to pick an choose what best fits your situation and write your own book. Relating to your situation and show it to those you are attempting to get through too.

Have a Blessed Thursday! Michele

Michele - Northern Kentucky


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10/15/14 4:25 P

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Ooooohhh, oooooohhh! I know an old geezer, I know an old geezer who's in trouble now. He's been having his sodium fun and now he's swelling up like a water balloon. Oozing and dripping, and now I have to change his bandages like I'm changing diapers.

Well, whatcha gonna do? He wanted these foods and he got them. Now he's paying the price. I have no idea how long it will take to get his legs back to where they were. Maybe he will understand that he's hurting himself and will be more cooperative. Then again maybe not.

As for me, right now I'm enjoying a very brief vacation from stressful cooking while he eats his way through his goodies. Once he's run out of yummies I'll be back at the cookstove again, stressing about what to make for him.

Tomorrow is the monthly face-to-face caregivers' support group, and of course I'll be going.

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10/15/14 1:53 A

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Good morning mid week, just read your mail and see your problem Laura. That stubborn man will kill himself but its his own problem now, you can't make him do anything . You much look after yourself now and try not to worry too much over him. You are worrying yourself into serious problems. You know all this of course .
The group on face book is Dmentia Aware . I look at it often as thare are patients and carers on . They answer questions offer sympathy and ptactical ways of help and we have laughs too,
Yes humour is important , to laugh with not at the patient. That silly comic I mentioned made jokes on being forgetful and asking have I got Alzeimers just to get a few laughs. The A society also made complaints saying he is doing harm not good at a time they are trying to make people more aware of A and its not just memory loss as so many think . The tv company also came in for a lot of complaints for allowing such jokes.
I was looking up stages of A, it's hard to be accurate but I think Maurice is going into middle range now from mild. It can last upto two years. He's having a bad morning now very forgetful and not with it somehow. I think I will have to keep an eye on him today and guide him through what he needs to do. He's not an angry man he's happy with himself and sleeps a lot now.
Have a calm day friends . Irene

Irene in Nottinghamshire UK
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10/14/14 2:42 P

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emoticon Laura!

Michele - Northern Kentucky


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10/14/14 8:05 A

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At this point I cannot, in good conscience, try to get Allan declared incompetent.

He does have noticeable problems with his short term memory. There really is early dementia here. The problems are enough to impair him. He can't reliably relay a phone message to me. He can't reliably get instructions from a nurse and follow them. He can't remember things we've done recently. He more often than not doesn't know what day it is. These things are new and are symptoms of something wrong with him.

But as for his inability to manage medicine, that's not new, that's old. He's been fired by one doctor after another, year after year because of this. He could never manage medicine. The reason we have been able to stay with the doctor we have now is that we talked about what was happening and we decided that I would manage Allan's medicine. Because I manage the medicine the doctor can continue taking care of Allan.

Same for sodium. He's never been able to make wise food choices. This is nothing new.

He's never been able to manage money. This is nothing new at all.

If I were to try to get him declared incompetent because of these impulsive and unwise behaviors, well, I'd feel dishonest because he always had these problems. They aren't new things that are now beginning to happen and which point to increasing dementia. They're old bad habits that he's had all along.

He's non-compliant and non-cooperative, but he always was. This is not new.

What's new is the short-term memory loss. Yes, he does indeed have dementia. But I don't know that it's time yet to declare him incompetent.

And there's something awful, I think, about being declared incompetent. Kind of dehumanizing. Kind of invalidating. This is something I do NOT want to do to him until he really is seriously senile.

I know from experience how sickening it is to be treated as if I am incapable of making any judgements. I know how horrible and demoralizing it was for me to have doctors tell me, back in the Bad Old Days When The Doctor Was God, "You don't know how you feel. You aren't able to judge anything. You must obey and do exactly as you're told."

My mother used to say, "Everybody has the right to go to hell in his own way" (and then she'd scold and nag at me for eating chocolate).

For the time being Allan has the right to go to hell, to a considerable extent, in his own way. He has the right to drink Clamato juice if he wants. I ask him, "Is this what you really want? Are you ready to pay the consequences?"

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10/13/14 10:10 P

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Your daughter is right. With out that legal paper he can also continue the same in the hospital, Nursing Home or where every he may find himself and that would be the same at his doctors.
All because of HIPPA, hate that piece of paper. It can be good, then again it can be bad.

All I seem to do is suck it up and emoticon Michele

Michele - Northern Kentucky


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10/13/14 9:03 P

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Well, yes, but in this house I cannot take Allan's food away. It would be, "Hey, where's my Clamato Juice?" He'd know if I took food away and donated it. And some of it is perishable and I'd have to just throw it away. My daughter pointed out to me that he has not been declared legally incompetent, and he has the legal right to eat what he wants.

There's really no clear answer here. I can't see One Right Way. There will come a time when he has to go to the nursing home, but I can't guess when. I was saying to my daughter that I won't know till I get there.

Meanwhile he's had a nice dose of sodium. And he'll have another dose of sodium tomorrow. He wants it. Okay, he gets it. I couldn't fight him any more today. I'll continue to cook low sodium as well as I can, but if he salts himself, well, salt it is. I can't be the Food Police much longer without breaking down myself. I'll discuss it with the doctor when I get a chance.

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10/13/14 5:30 P

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( Rant Away! ) Grocery shopping: had that problem with Grumpy, let him get what he wanted. Once home I kept the lowest sodium things he wanted and gave the other to a food bank. Frankly he did not know the difference. With my Heart Attack I spoke with the Nutritionist about the salt and Grumpy's wish for salt. She suggested the low or no salt and a bit of cooking with Sea Salt ( not much of that is needed to satisfy Grumpy. The Sea Salt I have is in a grinder so Grumpy does not use that much. He likes Tomato Juice so I use a 6 oz glass for him and that's it.

His COPD is more of a problem with him than the Lung Cancer. Getting him to understand the use of his Inhalers at present is a problem. Have been trying to get him to understand that his coughing usually starts when he has just taken a puff or has light a cig.
This afternoon after he light a cig, coughed hard twice, he said what's that noise I hear. It's wheezing caused by the phlegm you've coughed up in your throat from lightening that cig. Oh! says he as he put that cig out. So I checked his oxygen sats and they were 93% ..... whats that mean he says, Means, your oxygen content in your blood is only is at 93% instead of 99-100%. ..... Meaning oxygen is not getting to your organs so that they can function properly. In other words your starving yourself of oxygen.

I know what you are going through. It is not easy to watch someone purposely go for self- suicide. Gumpy feels that he has lived this long, the damage is done so why change anything.


Edited by: MICHELE142 at: 10/13/2014 (17:34)
Michele - Northern Kentucky


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10/13/14 4:59 P

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I do have a limited To Do list. There are lots of things I haven't done. Having ADD makes it very hard for me to get things finished. I do have a list now of a few things. I did get a couple of things done, but now I'm falling down on the job again. The depression is really hard on me now and is making it super difficult to cope.

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10/13/14 3:42 P

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[RANT ALERT]

I QUIT! I'M THROUGH! NO MORE BEING THE FOOD POLICE!! NO MORE NO-NO-NANNY!!

I don't know how much longer I can go on like this. Being Allan's Food Police is making me sick. I think it's entirely possible that I could get a stress-induced disease. Michele, you got a heart attack yourself. I believe I could give myself a heart attack or a stroke or cancer if I don't get some relief here from all this.

Allan wanted to go to the store and get some food. I hate to be the No-No-Nanny and say, "No, you can't go to the store with me." He gets out very little, mostly only to go to the doctor. Our road trip yesterday was a pleasant exception.

So I took him to the store. And of course he was grabbing at all the high-sodium foods.

I was saying No, over and over. No. No. Sodium. No. And things were getting more and more uncomfortable, the stress was getting higher and higher for both of us.

And finally I'd had it. I just couldn't go on saying No. I couldn't deal with it any more! I'd had enough, and I was fighting back tears. It was a no-win situation. Whatever I would do would be wrong.

On the one hand he is expecting me to take care of his health and do the right thing by him. On the other hand he sabotages me all the way. He complains that there is NOTHING for him to eat, NOTHING. Which isn't true, of course. Yes, there are things to eat, but his choices are limited.

But that's not my fault! I didn't give him sodium problems! It's not my fault he has heart failure and edema! Part of his health problems are hereditary, others are due to bad lifestyle. And now I'm supposed to fix it!

I'm supposed to fix it! I'm supposed to wear myself out and grind myself down making up for his lifetime of bad habits. I'm supposed to do the right thing and provide the right thing, and then listen while he fusses and stop him when he sabotages himself.

And he sure does sabotage! Any chance he has to eat salt, he'll do so.

He does NOT cooperate! He does NOT comply! Part of it is due to the dementia, very likely. But the other part of it is what he's always done. He was never, ever good at managing himself or cooperating with other people.

And he has never, ever been good at understanding that his actions have consequences. He's paying consequences now and can't understand that there's a reason he shouldn't have too much sodium. He sees it as life being unfair to him and spoiling his fun.

And he gets upset with me when I try to take care of business.

He'll ask me about a food, and when I tell him it's too much sodium he pouts and gets all unhappy and acts as if it's my fault that he shouldn't eat it. I'm supposed to take care of him, but I'm wrong when I do.

And the stress is wearing me down.

I gave up. I gave up as we were leaving the meat counter and getting to the dairy and juice and cheese cooler. I was just too burned out. Then he wanted to go to the soup aisle. Sodium City, and he saw things he wanted. And spaghetti sauce. Nasty stuff. I can make a really premiere spaghetti sauce that is wonderful and has no salt added. The only sodium is the naturally occurring sodium in the tomatoes, so it isn't sodium free. But it's something he can have. But that stuff in the glass jars is so off-limits. Still, he wanted it and I was now beyond resisting him and saying No and being the Food Police and the No-No-Nanny. I was just working on keeping from crying, and thinking about what I am going to tell his doctors.

I just can't fix this man! He has COPD, and he smokes. Ugh, you should hear his loud hacking and coughing, all that nasty ugly phlegm, hack hack hack, cough cough. And he wants a cigarette. And he wants sodium sodium sodium. I've been Policing and No-No-ing and have finally gotten the swelling pretty much down, but at the cost of major damaging stress to myself. He's going to swell up again and his leg wounds will open up again at the rate he's going. But I don't know how much longer I can go on struggling with him.

I feel expendable. I feel as if I exist only to be used up. Do I have to die for him? Do I have to drop dead of a heart attack in the supermarket, next to the Clamato Juice?

He wanted Clamato Juice. That stuff is a sodium bomb. He can drink an entire 64 ounce bottle over the course of half a day. That's 6400 mgs of sodium. He wanted Clamato Juice, and fortunately the only size they have in that particular supermarket is the 32 ounce size. That's 3200 mgs of sodium.

I rarely take him to the store, because it's always like today. But I don't think it's right to always have to say No and treat him like a child. Sometimes I think I do need to take him along and let him do things, too. It's not healthy or good to just stay there at home in front of the TV all the time.

I hate feeling expendable, as if I am of no value myself and that my only value is the service I give to others. I feel like a piece of toilet paper, use me to wipe your bum and then throw me away.

This feels like a no-win situation. There are people who believe there's a solution to every problem. He grumbles when you say No? Just speak in a cheerful voice! He's probably grumbling because you're not being pleasant enough. You say it's stressful to cook with little or no sodium? Just look for new recipes! It's easy. Sunshine! Happy birdies singing! Every problem has a solution. You just aren't trying hard enough! Just wear a happy smile on your face and everything will work out. And of course you can simply call an Agency! Agencies will solve all problems, of course....

I exhaust myself trying to provide food for this man. By the time I'm done I have no energy left for myself and I don't provide food for myself. For the most part all I eat is junk. I stress-eat high fat trash. And I'm gaining weight.

The other day I made some Real Food. It was good. I made stuffed peppers, but instead of the usual meat and rice and tomato sauce I made a really nice east Indian mixture of potatoes and cauliflower with spices and stuffed the peppers with that. Allan used to love east Indian food (he lived in India for three years). And I found some wonderful carrots in different colors. The usual orange carrots, and some yellow ones and dark red ones. I made a lovely carrot dish.

And no added salt.

He didn't like it, didn't want it, didn't eat it.

Why bother?

I can't eat his food. I can't eat fish, and I can't eat that greasy meat he likes. And he doesn't want real food when I make it. By the time I've managed to get something together for him, I'm done. I'm toast. I can't make two things, I'm too burned out and tired now.

If he were the only one who pays the consequences, well, let him do what he wants. But we all pay the consequences. I have to take care of him and change his bandages and take him to the doctor and revolve around him. He goes to the Wound Clinic and takes up space in their already crowded clinic. The taxpayers pay for his medical treatment. He needs needs needs, and the more he neglects himself and does the wrong thing, the more he needs and the more I have to do and the more the doctors and clinics and sometimes the hospital need to do, and the more the taxpayers have to pay.

I'm fat and grumpy right now, and near tears. But the day is not over yet. I will be walking down the street to Curves to work out with my daughter, and that will be good. Exercise is good, and then it will be evening. I'll feel better and then I can go to bed and end the day.

[END RANT]

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10/13/14 3:40 P

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Hope everyone iS having dry, peaceful, day today. Mine started out quiet, then got demanding than I decided to head to Starbucks & a walk around Kroger's. Came back refreshed and loaded for bear. Someone realized a was loaded for bear and is's very quiet at present.

All the rain we were promised for today has not happened. As of noon, it's now due in here late tonight. If one looks at the weather maps we are in the red zone till late Thursday when it continues East. Which puts rain in the forecast for Wednesday's Chemotherapy along with the chance for Tornadoes.

Curious? How many work from a ToDo List?

Michele - Northern Kentucky


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10/13/14 7:44 A

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That's happy news, Irene! Now that Maurice is having difficulty with feeling positive emotions it's so good that you've discovered something that can make him laugh. If he can laugh at home with your smaller TV and these DVDs you'll have something that you can use to cheer him and occupy him when he needs a mood lift.

I'd like to know what the joke was and in what context it was told. If caregivers are angry, it was probably a cruel joke by an insensitive comedian who doesn't understand and doesn't care about the hurt he's inflicting.

Humor is such a two-edged sword. It can make people happy, but it can also wound and destroy.

And then there's the business of outsiders and insiders. When outsiders make ignorant jokes it causes pain. But insiders will make inside jokes as a way of relieving stress. Gallows humor is valuable for people who are stuck in a bad situation. But any outsider talking in a similar manner would be horribly hurtful.

I googled to see if I could find the Facebook site, and I see that there are many Facebook groups about Alzheimer's. Do you have a link to your site?

Allan and I can joke gently about Oldtimer's Disease, but any ignorant outsider would be ignorant and hurtful.

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10/13/14 2:56 A

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Thank you Laura for saying not to apologise for venting, it is a learning curve and we learn from each other.
On tv last night a comedian made a joke about. ALzheimer's not funny and stupid. I disn't see this but on a team on face book the comment just poured in attacking him. Really viscous nasty things being said about him were upsetting. These are carers making comments like I hope he gets mangled up in a car accident on the way home. Lots were sending complaints to the to company. I would have had I wtached that show. But it proves how protective carers can be about their loved ones.
We were at our sons yesterday , the children watching a Disney cartoon on a huge screen and there was Maurice sat with them laughing and so animated. I hadn't seen him as active in ages. He called me to go and watch and was pointing out things to me. I took this in. A grandson told me they have lots of DVDs of Disney cartoons we can borrow. Yes please, we haven't a wall to wall screen as my son has but hoping M will enjoy them on our tv.
Have a good week. Irene

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10/12/14 8:10 P

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There is rain forecast for tomorrow and all week, but today was sunny and mild. So I loaded Allan into the car and took him for a ride in the direction of the Pennsylvania Grand Canyon. We didn't actually get to the PA Grand Canyon, nor was I trying too hard because Allan has such a problem walking, and in the park overlooking the vista it is necessary to do some walking. So instead we had lunch and then came back. Nevertheless we saw pretty fall foliage and had a nice ride.

He'll be talking about this. He'll be saying, "Remember that we went for a ride? Now, where was that restaurant? The leaves sure were pretty." And he'll say it over and over and over. Which is nice, and sure better than remembering bad things and saying them over and over and over.
emoticon emoticon emoticon emoticon
I expect your rain will arrive here some time tomorrow.

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10/12/14 7:55 P

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Evening, great day for emoticon kept Grump quiet and he was left all to himself. Had to laugh though as he called his oldest son and told him he was hungry and had not eaten. So his son text me to let me know that Grumpy had not eaten. Went into the Living Room and asked him what he wanted for Lunch. He said nothing as I'm not hungry. I said what do want for Lunch since you called and told your Son you were hungry and had not eaten. Total surprise and silence....... So he got his cheeseburger.....it has been quiet the rest of the afternoon and the early part of the evening. I always heard, there are ways of skinning a cat!

Have an awesome week ALL!

Michele - Northern Kentucky


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10/11/14 9:36 P

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Evening....Spent a quiet day with Ole Grumpy. I say quiet as when the Grumpy came out I disappeared in the computer room and started pitching, throwing and doing a few chair exercises. Thus, the get mes and I needs where down by Grumpy but I still handled the things it was not safe for him to do. Oh! Happy Day!.

And interesting happening....While the cable company was doing their thing this past week, we now have a new service added to our package. Caller ID is now showing up on the TV screens. All out going calls on the phone extension in the Living Room are showing up as well as the number being called. Grumpy is not aware of the out-going calls. So unless he decides to entertain the PC in this room he will not know about it from me. Who knew!

No plans for tomorrow unless something is desperately needed. Rain forecasted until possibly Friday. Besides it is time to get the first round of bills out for this month.
Have a Blessed and Safe Sunday! Michele

Michele - Northern Kentucky


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10/11/14 9:13 P

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Dear Irene, do NOT, NOT, ever apologize for "offloading" on us!! We offload here, too, after all! That's why we have this team!! This is the place where we can talk about these things.

And we care. What happens to us on this team matters to us. I worry about Michele's Bob, and I care about what happens with Maurice.

It sounds as if our dear Maurice is losing his empathy and emotions around empathy. One thing you do when you report these things is that you educate me. Allan still has his emotions, and I'm glad they're the good emotions. But now I know it's possible that he could lose that capacity. His great loving emotion might some day vanish.

I'd think it would hurt terribly. But I think Maurice always loved you, and this lack of affect is an Alzheimer's thing, it's not about you, or the love you and Maurice have had all these years.

What can I say? Losing Maurice's humor and sympathy is a big loss.

And never apologize for talking about these things!

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10/11/14 8:56 P

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Hello, Dear Caregivers...I hope tomorrow will be a good day. Not that today was bad, not at all, but I'm TIRED! TIRED!

That flu shot kind of knocked me for a loop. This has never happened to me before in all the years I've had flu shots. I wonder if it's my age, or if it's that I'm having some real problems with caregiver stress that are messing with my immune system and my health.

I do know that I would be a very different person if I weren't a caregiver.

Last night I bumped into another member of our Jazzercise class and learned that our dear recently widowed Mandy would be teaching again today, this morning, at 8 AM.

Ugh! But I got up early and went to the 8 AM Saturday morning class because I wanted to be there for Mandy (and I wasn't the only one - Mandy is well-loved, as was our dear Jerry).

Today, when I already had other active energetic things happening. Today, this afternoon was a belly dance workshop. Four hours worth of dancing, first learning hand and arm movements (which I'm glad I learned there) and then Egyptian choreography, which was nice, but if I'd known how tired I'd be I wouldn't have signed up for that one class. I'd have just taken the hands and arms class and then gone home.

There is a belly dance performance going on right now. If I hadn't been drop-dead tired I'd have gone and first eaten really great middle eastern food and then seen the performance, which I'll bet is really good. A teacher came in from Washington DC to teach this workshop, and I would have loved to see her perform, oh! right now! I'll be she's dancing right now!.

But I'm too tired! Just too tired! If I hadn't been so exhausted I'd have asked Allan if he wanted to go, and would have gone with or without him.

Next year I'll know better. I'll have my flu shot at a different time (and I have no idea whether or not I'll have a reaction - this is something new), and I'll be well-rested before whatever workshop we have.

And of course I can't predict now what kind of condition Allan will be in. Bring him? Or will I be trapped at home with him? Or will he be in the nursing home?

Don't anybody ask me to make any promises! Nothing is predictable now!

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MICHELE142's Photo MICHELE142 SparkPoints: (109,493)
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10/11/14 10:02 A

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Slight reactions with Robert's Flu Shot over Thursday, gave him Tylenol Tuesday and Wednesday twice a day and his much better. He's back to being Grumpy again!

Problems with cable from Tuesday to Thursday as the Cable Company was busy changing the lines throughout the city. Internet was messed up, then had problems with Spark site on every device we had up and running. All problems now minor but frustrating, right now my patience is on a very short fuse.

Thank goodness no emoticon in the forecast for today! Have a great rest of the weekend. Michele

Michele - Northern Kentucky


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