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STITCHINGNAN's Photo STITCHINGNAN Posts: 10,638
9/20/14 5:41 A

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Hi on Saturday I had an awful night of sleep last night , though I had bought a herbal liquid said to help me sleep, it didn't. But maybe needs several nights of it in my system . Maurice sleeps like a log at night and dozes all day, he has nothing on his mind and no worries.
I did get a hair do in yesterday which gave me a break. Our grown up grand daughter came to sit and talk to Grandad, she was asking him about where we had lived in the past. He was a bit upset when I got home as he could not remember some places we moved a lot with his job. I told him it's not surprising he forgot and it's not important. He was worn out and slept a lot then.

Of course we get angry , I try not to get angry with M but at the system in general , as you say we are just left to get on with it.

M can go to local small shops where they know him and it's not far to walk, he has to write down what he's going for. I smile at the spellings . Coli flour was one, well it's near enough, but sometimes he puts the wrong word on the list so I never know what he will bring back , he says he can't read my writing for me to do a list,

Oh a good thing this week, I bought M a wrist watch with Velcro strap on line, he can't cope with buckles and fastenings now but loves a watch, it's ideal for him . It's a sports mans watch big clear numbers and a strong Velcro strap. He's like a kid with a new toy,.
Oh tv? Nothing exciting just the tv rental company coming to fit a viewing box, where we can download films and box sets easily. Well I hope it's easy.
Have a calm weekend , Irene

Irene in Nottinghamshire UK
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9/18/14 11:16 P

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Sleep well and sweet Dreams emoticon

Michele - Northern Kentucky


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9/18/14 11:12 P

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Smoking? Smoking? Okay, Michele. I have this old geezer who has started smoking again. He says he wants to quit, but I'm not going to expect anything from his declarations.

He doesn't have cancer now, nor chemo, but I'd like to know about the mind change.

Oh! I absolutely MUST go up and go to bed!
emoticon I really like the little sleepy emoticon. Sleep is so precious, such a respite from all the demands of the day!

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9/18/14 10:57 P

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Oh Irene! You said it. Maurice was forgetting who Phil is!

That's the thing that scared the daylights out of my Dad. Grandma looked at my sister, her own granddaughter! and asked, "Now, who is this nice young woman?" My Dad knew something was wrong.

That was a long time ago. We're talking about the late '50's and early '60's. Grandma did go back to Oak Park, Illinois, which is a suburb of Chicago, but things continued to go wrong.

(Irene - from central Pennsylvania to Chicago, Illinois, I'm comparing the US to Europe. Many of our states are the size of many European countries. I'm tired now, but I need to look at a world map and compare the distance.)

And before long we had Grandma here. Someone got hold of my Dad and told him that Grandma was wandering around and getting lost, coming in other people's apartments and not knowing where she was. My Dad had to bring Grandma here. She couldn't stay there, even with a housekeeper to be around her.

Irene, I'm glad Phil sees and knows now. And if/when you tell the family you will have Phil to verify you. I hope he can enlist some support for you.

So are you a saint or are you not? Am I saint? No. You should hear me swear. I curse and swear like a drunken sailor! I get angry and frustrated. If you ask me, I will tell you that I'm an angry person. I'm angry at the difficult medical care Allan sometimes gets. I'm angry that it's all on me, that there's no Santa Claus, no Easter Bunny, no Tooth Fairy to provide us with some services of the kind we really need.

Say what? TV coming? Are you going to be on TV? Please tell us!

I went to the doctor today. For *myself*!! How weird! Me and not Allan! It's always Allan. It appears that my heart is okay, but I swear I'm dying from Terminal Caregiving, as are others here.

The doctor and I both agree that it's not yet Nursing Home time for Allan, and he believes me when I say There's No Santa Claus, no Easter Bunny, no Tooth Fairy. Caregiving sucks, and it's all on us.

Oh, I'm tired now, and it's way past bedtime, but I wanted to post here.

Goodnight!

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9/18/14 10:50 P

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Actually, one that knows someone that smokes should do some research. For that matter anyone with cancer and on chemo and/or radiation. There is a mind change that is not listed as a side effect. Education is a pathway for knowledge.. You would think doctors would know more than we do, and there are some that do!

I always and Mom and Dad to talk to and they were always ready to listen and help when needed. Their gone and my sister is gone as well along with my best friend. I'm now alone basically using my career as a guideline in caring for Robert. His two orthopedic surgeries where not a problem I was used to that however, have taken care of many Cancer patients...none had Lung Cancer. So, this is a learning experience for me.

Early day tomorrow, so bed early tonight. Michele



Michele - Northern Kentucky


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9/18/14 10:15 P

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Oh, Michele...I ought to know more about chemo, but I don't. Years and years ago back in the '60's (oh, how long ago that was!) my mother drove her neighbor to Pittsburgh for chemo. That was at least three hours drive in those days. There was no chemo available around here in central Pennsylvania at that time.

And her neighbor would be feeling all tired and sick afterwards.

Times have changed now. It's no longer a day trip to Pittsburgh.

I really need to know more, because our dear Jazzercise instructor's husband is going through this. I think I forgot to mention, there was a fundraising event last Saturday, racing and walking for lung cancer. A bunch of us from Jazzercise were there because we do love our dear instructor and, well, I said to her, "You know, of course, that you're sharing your husband with all of us. He's our mascot." And she laughed and said, "Yes, Jerry is your Jazzerhubby." So a bunch of us went out to raise money for lung cancer research. During the event we raised $30,000, and there will be more contributions to bring the total higher. They're still collecting money and will be collecting until some time in October.

It was so rainy! But in spite of the rain we came out to participate. The dear husband we all want to support was there and was so heartened when he saw how many people wanted to help and who cared about him.

I had a bit of a hard time for a moment. When I signed up I said I was there to support Jerry (our instructor's husband). But there was a place to write "in memory of". I had a lot of pain for a while. My dad had lung cancer, too. I wrote that I was walking in support of Jerry de Franco and in memory of Evan Johnson.

And when I started to write my Dad's name I had to hurry and finish writing and change the subject, because if I didn't I would soon be crying uncontrollably. I have some really painful unfinished business with my Dad. No, it's not about abuse. It's more about absence. In some crucial ways he wasn't there. I needed him and he wasn't there...

And now I have to stop and change the subject!

Gotta stop!

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9/18/14 2:45 P

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emoticon Actually got eight hours of sleep last night. Robert was exhausted from his Chemo and Breakfast out. I was exhausted from all that and running my afternoon errands and what had to be down last night. So today around noon I left for some more errands while Robert napped for about the 2 hours I was gone. Good thing.....Robert did pick up a 4 # weight gain this past Wednesday emoticon

Lunch over, now for the financial keeping of this Family.
Enjoy the rest of the day! Michele

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STITCHINGNAN's Photo STITCHINGNAN Posts: 10,638
9/18/14 3:39 A

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Oh I do like talking to you girls. You understand instantly and don't make judgements !
Our sons visit was wonderful for me, normal conversation! I wore him out constantly talking. M did not cope well. He kept forgetting who Phil was and why he was here. His normal routine went out of the window , he started getting dressed as soon he was out of bed, I reminded him bathroom first and so it went all day.
Phil was taken aback at how his dad is now and thought I was a saint, he wouldn't have later when I had to walk out of the room before I exploded ,
I am taking on board advice on trying to ignore annoying habits ,
I have learnt now do not tell M anything amusing,he won't see the point of it,
Do not talk trivia or of my friends as he doesn't really know who's who,
Just take one day, one hour at a time, i just mentioned tv firm were coming on 23rd, Big panic what for! Is that today? No don't worry over it, I will remind you when it's due, .
I was glad our son saw his dad as only me sees him. P says he will visit again but stay in a hotel as it upset Maurice's routine so while he was staying.
He says I should tell the family just how it is and get them involved more ,
You all have your own problems I do appreciate . I haven't been able to do team chats this week much so have a lot to catch up on. Take care . Irene

Irene in Nottinghamshire UK
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9/17/14 10:38 P

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I have been rung out to dry, walked and sat till I no longer want to do either. So tired and I still can not sleep. Today was Roberts 3 rd Chemotherapy, afterwards his Son took us to Breakfast, once home I left to run errands for myself. Do not want to do or even talk about walking or sitting for at least another 12 hours.

Sleep tight! Michele

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9/16/14 11:11 A

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The problem with Downs for many, many years has been expecting them to show adult behavior and they do not always do what we think they should be doing and acting. In some ways Dementia behaviors show some horizontal behaviors but not always. There are a few that by repetitive teaching can hold down certain jobs. Goodwill does this frequently for those with Downs and other organizations as well. So in time many are working, and drawing a paycheck. that gives a change from a Negative to a Positive way of thinking.

Roberts oldest Son is actually the only child as well as mine that have remained close to him and they know just what he is going through. He has two GDs who also have stayed by him as well. His other three have not been close or visited him since he retired. He had to go to them if he wanted to see them or his grandchildren by them. When he had to have surgery - in the past - they were present the day of surgery and that was the last until the next surgery.
Lately Robert has said " If they can't visit me now, they better not make it to my Funeral".
He has said it to me and his Oldest Son but not to them that he was used by them and they still expect it. ...... Cancer itself will zap the energy, so will the Chemo. seems to be a twofold-pairing! He does have more days of activity now way more than before he was diagnosed. One thing Positive is his appetite is beginning to pick up.

Have a Peaceful Week! Michele


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9/16/14 6:51 A

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Hello, Michele...it sounds as if Robert's younger sons don't really understand what's going on because they don't see him very often. And sometimes our loved ones can perk up when there's a visitor, and the dementia doesn't show much, and the family member doesn't get it or understand what the situation really is.

Am I right that chemo makes the patient really tired? And sick and in need of medicine to counteract the nausea and sickness?

It sounds like problems with Down are much like the problems with other diseases that lead to childish behavior and mentality. It seems weird when an adult is acting like a fussy little kid. Somehow we expect people who look like adults and are the age of adults to act like adults, but they aren't and can't.

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9/15/14 11:27 P

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At times, Irene your DDILL's observation brings on big feuds in a Family. Robert's oldest Son tells his siblings that they see their Dad once or twice a year and they only see the outside of Him and have never paid attention about His inside. So this birthday weekend, his youngest along with his oldest were the only ones who visited. I did get a text from his youngest son , saying he did not know that his mind was so bad. My reply, Really, those that are around him know he's not always they way he was when you were here. You should vsit him more often, that way you won't be posting Negative posts on Facebook. So far no response, I'm getting to feel the way his oldest and and Robert feel. " If you can't visit now, do not visit my Funeral."

A lot of the care for Downs is suggested more for the functional or mental age level of the person an not the chronological age. There can be a big, big difference. The actions that you posted, sounds like a toddler or older child that has not gotten their way Temper Tantrum ). What you did was correct and should not be deviated from if it happens again. It's hard on you, however if awarded it will continue. Do you know both of her ages?

Robert starts his second round of Chemo this Wednesday and it's only Monday evening and I'm whipped. Got a feeling this week will be harder on me than on Him.

Have a Blessed week.



Michele - Northern Kentucky


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9/15/14 9:51 P

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Hello, Irene, and please do NOT apologize: "sorry it's me me me again in my mail."

Yes, this is the place for you you you, just as it's the place for the rest of us to talk about us us us. That's why we're here! We have a place here to talk and vent and complain and ask for support and even suggestions if someone has had this same problem and found a way to deal with it.

So keep on talking about you you you, because it matters and we're all here to listen to you. I talk about myself and Allan and the stuff that goes on. And you can talk about yourself and Maurice, and Michele can talk about herself and Robert. And Sara has just told us about here struggles with Cindy.

I hope that Phil will be able to see the changes and recognize that something is going on that needs to be addressed, and is becoming too much for you to carry by yourself. Yes, putting the radishes in the drawer - I think I told the group that Allan took the cheese off his pizza and put the crusts back in the box and put the box on the floor. That's Alzheimer's symptoms.

There's no sense arguing with Maurice over his clicking his teeth and the fact that he's wearing his teeth down. Making an issue of it won't stop him or fix his teeth. I work on not creating an issue with Allan's problematic behaviors. He does these things. I don't like it, but I can't fix it. I'll go and do something else and just not try to deal with things I can't deal with.

Oh, I hate it when well-meaning people try to help by minimizing things. "Oh, everyone does that!" I hate it, I hate it! It invalidates us!

Yes, yes, of course, everyone has stress and strain, we know that. No-brainer. That comes with Life. But caregivers have more stress, heavier stress, crushing stress. We need help that other people don't. I hate having my situation minimized!

So I look the person in the eye and I say, "Yes, I understand you want to comfort and reassure me. And yes, I know that everyone has stress. But I need you to understand and validate that caregivers have far more stress than many other people, and this stress does damage to our health. Please don't minimize my situation! My health is at risk now. Please understand also that I see things that you and others don't. Things look good to you while you're visiting, but I need you to understand that once you go home, the situation deteriorates back to normal, a normal you don't see."

I hope you can persuade your ddil that you are the accurate judge of the situation, and she should trust your judgement. It would be so good if she were on board with you and could be supportive.

Please keep talking, Irene, and don't apologize for talking about yourself!
emoticon

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9/15/14 9:26 P

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Hello, Sara...although I have no answer for you I am very interested in your question. When I get time I want to go to Google and ask your question there.

I don't know anything in general about Downs. OTOH, I did know a young fellow in his late teens who has Downs. That was in the late '80's. Ummm...that means he'd be around 40 or so now...

He was sweet and simple, and he functioned well enough that he was able to "graduate" from high school with his class. I gather he got a Special Education certificate while the other students around him got diplomas. He worked for a while in a fast food restaurant, and the last time I saw him, a number of years ago, he was working as a janitor at the mall.

But I have no idea what problems can be created. He will never be able to be fully functional on his own, and someone will always have to be a caretaker.

As for his sweet disposition, I have no idea if he is becoming difficult as he ages.

I just now went to Google and came up with these links:

http://www.ndss.org/Resources/Wellness/M
anaging-Behavior/

http://www.down-syndrome.org/reports/282
/

I get the impression that Down Syndrome people age faster. Could Cindy be behaving like a much older person with Alzheimer's?

http://www.intellectualdisability.info/l
ife-stages/ageing-and-its-consequences
-for-people-with-downs-syndrome

This is me coming out of nowhere, asking Google about a topic I know nothing about. Maybe you can find more and better information from Google.

I wonder if some of the things that are effective with Alzheimer's people would also be useful in your situation.

Alzheimer's Reading room:

http://www.alzheimersreadingroom.com/

http://www.alzheimersreadingroom.com/201
4/09/6-good-articles-alzheimers-quotes
-and.html

Please keep posting. I'm interested in what you have to say, and what things Alzheimer's people and Down people have in common.

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9/15/14 8:20 P

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I was wondering if it is normal for a 56 year old Down Syndrome to be so negative, crabby, unhappy all the time. This weekend my husband and I took Cindy to see a movie (Dolphin Tales 2) which she loved by the way. Afterwards she wanted to go to Pizza Hut for supper but it was not supper time yet (only 2 pm) I explained that is was only 2 pm and we will have to wait until supper time. She then got upset started bawling right outside the theater and started hitting. So I went to get the car and tried to get her in but she wouldn't go. Gave her time to cool off, but then once in the car she started kicking the back of my husband's seat all the way home while bawling at the top of her lungs. She has behaviors all the time like this. Always tries to get her way. The weekends are the worst, but we only have her 1 or 2 weekends a month. Just wanting to know about how others handle situations. I am loosing patience with her lately which I did not when I first started working with her in January. Plus she seems worse than before. So was wondering if this is normal behavior as people age especially in down's syndrome.

Thanks,
Sara

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9/15/14 10:19 A

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Morning, on a 50 degree sunny morning as well. Robert up early this morning and showing signs of the strain of being so activity the weekend. So before long he will be napping for the rest of the afternoon. Nothing big planned for today on my part. Just picking up prescriptions and a few necessities from the grocery store. Up late last night as just to tired to fall asleep until around 3 a.m.. So this morning I'm walking around in a thick Fog.

Have a Safe and Quiet Day! Michele

Edited by: MICHELE142 at: 9/15/2014 (10:20)
Michele - Northern Kentucky


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9/15/14 2:46 A

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Hi on Monday, our eldest son Is visiting us for a few days, he's not here yet but on his way. It will be good in some ways and I think family should see their dad at home. He is different when we were out, I was telling my ddil that my doctor saw signs of strain in me. She told me everyone has strain and stress now, I told her the doctor wants Maurice to go to a day care centre. Her reaction was oh he's not ready for that yet. I am only one who sees him on difficult days very argumentative and repetitive. He denies he did things yet there is only two of us here and I know i didn't put a pack of radish in a living room drawer! When i found them they were rotten and disgusting. He denies he clicks his teeth constantly ,I know he does, the clicking drives me mad , I have given up telling him he is wearing the edges off his teeth, that's his problem . So will see how it goes now with Phil staying, sorry it's me me me again in my mail . Have a calm week, Irene

Irene in Nottinghamshire UK
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9/14/14 10:38 P

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Great Birthday weekend for Robert, now all I need to do is decided what to do with the remaining birthday cake. Ice cream will not be a problem. Did find a way to get veggies in him. Last Monday he asked for some Tomato juice, he got it and is about 6 ounces away from finishing that bottle. Eating, just wears hims out as if he was walking from his chair to the car ( about 50 feet away ).

All I need now before I find my pillow is to unload the dishwasher, load the dishwasher and do something with whats left of his cake. Then it will be Lullaby Land for me ( as long as that owl doesn't hoot for 3 hours again tonight.

Have a great Week! Michele

Michele - Northern Kentucky


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9/14/14 8:39 P

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Ooooooh, I'm drop-dead tired now and want to call it a day. But it was a nice day. I'm tired now because we took a day trip to Ithaca NY to see our friends whom we haven't seen for, oh, a long time, two years? more?

Allan had a nice time and, well, I don't know if our friends could notice any difference or not. I live with this thing day to day and don't see it the way someone else would who hadn't seen him in a while.

And I don't know if our friends noticed when Allan said, "We sure are having mild winter. I'm surprised we haven't had a foot of snow by now." Later as we were getting in the car Allan asked what month it is.

Onward and downward!

But hey, wow, my Dirty Old Man is a Clean Old Man today. He had his fourth shower of the year this morning before we went to Ithaca. Whoop-de-doo!

Now I'm about done for the day.
emoticon emoticon

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9/13/14 9:01 P

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Before retiring from Home Health I had several patients with Down Syndrome, their ages ranged from 5 to 21. Did have a few when I worked in Coronary Care that were from 15 to 18. Also had a cousin that had Down but she contracted measles at age 3 and passed a month later.

What info are you looking for? Let us know.

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9/13/14 8:38 P

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I was wondering if there is anyone in this support group who has experience with taking care of someone with Down Syndrome. I am currently taking care of a 56 year old with Down Syndrome and could use some advice and support with others who have experience caring for someone with this diagnosis as they are quite challenging. Thanks!

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9/13/14 12:25 P

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Hi, Michele...I do know that women tend to have different symptoms than men. We don't always get the same kind of chest pain.

Tiredness, sweating, some kinds of pains, tight chest.

I'm glad you posed this question. Right now I'm going to take a nap, but then I'm going to ask Nice Mr. Google about this and make the effort to remember what I read about it.

emoticon emoticon emoticon


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9/13/14 11:01 A

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emoticon Do you know the signs and symptoms of a Heart Attack in Women? emoticon

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9/12/14 8:22 P

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Hello, Irene...oh, I remember when Allan struggled to get money out of the cash machine and couldn't remember his PIN number. Once we finally got the PIN numbers I took charge of the situation, and now I get his cash for him and help him with his access card.

And I was sorry to hear that our dear Maurice was unpleasant and mean to you the other day. That topic has come up on the Alzheimer's Reading Room. Bob had a hard time because his mother, Dotty, who had been a nice person, was saying mean and hurtful things. It's hurtful and wounding when our loved one gets abusive and nasty. Bob figured out how to deal with the meanness:

http://www.alzheimersreadingroom.com/201
1/01/alzheimers-communication-tip-touc
hing.html

http://www.alzheimersreadingroom.com/201
3/12/10-things-person-living-with-deme
ntia.html

http://www.alzheimersreadingroom.com/201
3/01/how-to-listen-to-alzheimers-patie
nt.html
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9/12/14 7:57 P

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I am up in the night again. I had a bad day yesterday and hit the chocolate , I had been avoiding eating chocolate!
I had my check up at the doctors she told me she could tell I was feeling the strain of caring more . Yes suppose I was . Maurice had gone out with me before the appointment. First job was draw cash out at the cash point,, M has always coped with that and proud he remembers the PIN number. , well something went wrong and he couldn't get any cash out, the card was rejected then so I couldn't get any cash out. It worried me as it was another sign he is slipping away ,. He told me he needed to buy something ? What ? He couldn't tell me but spelled it out as SOP.? Soup ? No. He indicated washing his face, oh soap ? Yes he uses a certain brand of soap , I got him some, then sent him home while I went to the doctors ,
I was ok generally anyway but she wants Maurice to go to the mental health hospital to be assessed, . She wants to check on him first in a couple of weeks, also suggested he is ready to go to a day care centre once a week,? I am not sure on that , but will see after she has seen him and talked to him ,
I think it all got on my mind so I had a bad day unsettled tired, drained somehow. Yet I can't sleep. I took half a sleeping pill so must try again now, good night .

Irene in Nottinghamshire UK
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Good morning and a chilly morning it is. Not sure whether to embrace the coolness or prepare for Hotter temps once again. emoticon leaves are beginning to turn and leave the trees, snow noted in the border states with Canada. Perhaps temps really will remain lower than last month.

No plans here for today, Got a list of ToDos for today and right now have only been able to complete one and working on the other. I have today and this Saturday to get caught up around here as Sunday as Robert's 79th Birthday. Sunday needs to be a quiet one before he starts his second round of Chemo next week.

Have a great day and a peaceful Weekend. Take care of yourselves. Michele

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9/12/14 8:25 A

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Good morning, good afternoon, good evening, whatever time it is wherever we are...yes, we caregivers do have to get our health checked up. Sometimes it's hard, when Allan's needs come first and there just isn't time or energy to take care of myself.

It's easier for me to urge someone else to take care of herself than to take care of myself. I go to Jazzercise, where we have a wonderful and charismatic instructor who always has a smile on her face. But I know that her health is suffering, despite her cheery persona, because her husband has lung cancer and she's under severe stress.

I sent her an e-card to tell her I do care, as one caregiver to another, and I hope she will be able to have the doctor check on her chest pains.

And now it's time to get off this chair and get moving and get doing.

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9/12/14 1:46 A

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Our climate has changed a lot over the past years , but in Tudor times it was more stable but I believe winters were colder in England then. There's been many reasons why clothing styles changed ,I have dine research in it, have many notes, pictures, dolls in costume over 2000 years styles , really it should be all on computer . All I need is time,

I have a medical appointment today, just a check up. As a carer I have regular checks and enquiries to see if I need help. Will wait and see what's said today,
Byee Ree

Irene in Nottinghamshire UK
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9/11/14 11:40 A

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Irene was that not the era in the Little Ice or through the Dark Ages with the cold, that heavier clothing is mostly seen in the Wealthy/ Royalty?.

Edited by: MICHELE142 at: 9/11/2014 (11:48)
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9/11/14 2:08 A

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Yes please Michelle share anything with us that may help us , I know my own weaknesses,I am still too sensitive over unkind things that Maurice says to me , I know it's not him talking, but sut still hurtful , i walked out yesterday for a break, just to local shops but I needed that but of space between us at that time,
Laura yes you are right about playing cards and Tudor times. Re uncomfortable clothing, what we see is what the rich people wore for special occasions. The workers and poor people couldn't have coped with all that . In fact there were many laws about who could want what. The big lace collars like wheels were ruffs. They were a status symbol , the more important you were the bigger the ruff but working men were limited to, I think think it was two yards of material in their ruffs, I haven't done talks for a while but it's such a fascinating subject,
I am meeting a friend today for a chat, I am looking forward to it,
Irene

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9/10/14 2:53 P

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Irene, I'd just LOVE to hear you talking about the history of clothing! I like clothes that are both comfortable AND pretty.

I think about your Queen Elizabeth the First and those clothes she had to wear. Those dresses must have been very heavy, with all sorts of stuff underneath to hold it in position. And those funny big collars that look like a wheel around her neck. How terribly uncomfortable she must have been! How did people then put up with it?

If I'm not mistaken our playing cards are from the Tudor era? Doesn't the Queen have the kind of hat that looks like a box standing on its corner that Catherine of Aragon wore? And didn't Anne Boleyn wear such a hat? And Jane Seymore? And isn't the King fashioned after Henry VIII?

I'm sure they had to dress for warmth in the winter. I'd suppose those palaces and royal residences could be cold. But how about the summer? I'd think all those clothes would be unbearably hot.

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9/10/14 2:42 P

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Yes, Michele, and thank you! I'm always eager to learn new things about all this. Do get threads started!
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This week Robert has no Chemo treatments, so took advantage of that an attended a meeting that his CTC has for Caregivers. Needless to say it re-enforced what I knew but, Gave me a bunch of new info. that covers caregiving in general. I'm reading the info I picked up and thought I would get some Threads started so I can share with everyone. Some we know but there is some new avenues that can help. ..... Need to get some Laundry done that Robert quit in the middle of, so check-in later.

Michele

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9/10/14 2:12 A

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You have been around. Laura , and now more a home bird but have wonderful memories, I love old buildings and historical things too, I used to give talks on historical costume and still very interested in clothes styles and how they change. Though theses days we dress for comfort not style, have a good day, Irene

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9/8/14 8:50 A

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I love to see old pictures. I want to go to our historical library and see if I can find a picture of the house I now own. I'd like to see what this neighborhood looked like 100 years ago.

Here we seem to think something is old if it's over 100 years old, and really old if it's 200 years old, and even older than that if it's 300 years old.

We were in England in 1970, and we stayed in a hotel that had once been a residence of Anne of Cleves. And we were in another hotel that was so old that the rooms were all crooked and the floors slanted and the doorways lower for people who were shorter than modern people. In Germany we saw a part of an old gateway that the Romans had built there.

And when I was in India I was in Vararnasi/Benares/Kashi which is said to be the oldest still living habitation , and I found myself walking through the oldest part. There was something wonderful about being in a place where people had been living and walking around thousands of years ago.

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9/8/14 2:17 A

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Happy belated birthday Laura , any day can be a celebration day, wait for a good day and call it your birthday ,
Yesterday one of our boys wanted old photos of himself for a memories evening, I dug out old family pics, oh so easy to get sidetracked . Maurice wanted to help but kept picking out a photo saying this is Ian, no it isn't is Phil . Good job I know our kids even when they were young , I suppose on another occasion looking at old photos may be a good idea and stir up memories. They suggest that at Alzheimer's club, we only went once .They had photos of old Nottingham which is where we live now but didn't do till recently so they meant nothing to us. Then they started playing silly games and neither of us are games people so we left , spoil sports ,
Have a good week, Irene

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9/7/14 9:33 P

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Football Sunday. I'm totally out of the loop. I don't know who plays football besides Penn State, and I'm really not interested. I'm one of those who goes into hiding on Penn State Football Weekends because of the traffic. It looks like Penn State won the game this weekend with the new coach. Will Penn State ever get out from under the Sandusky Scandal? We're a good school, and all that got lost for a while.

Oooh, bedtime now!
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Guess one could say that you had a reason to clean the counter top and mop the floor. However, that's an expensive way to do it.

Robert and I had a betting day. Football Sunday. Think I'll put him on the scale and see what's up since he has been eating 2 -3 good small meals a day. Tonight he had a snack of Strawberry Yogurt and SF Vanilla Ice cream. In the morning we are meeting his oldest Son for Breakfast. Robert has been wanting Biscuits an gravy, so tomorrow he will have it. I just do not make gravy as " Mom " does. It must make my Mom's as she could not make gravy but, Dad sure could.

No chemo for this week, so I do have one day to stay home. Have a great week, smile! Did you know you use more muscles smiling than when you frown?..Night.....Michele

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9/7/14 8:48 P

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Yuck. Happy Unbirthday to me. My kitchen sink backed up and overflowed and water went out all over the counter and all over the floor.

A week and a half ago or so I paid $153 to have the drain cleaned out. It was working nicely till yesterday when I saw that water was backing up again.

Today I was out with my friends, and when I came home later in the afternoon I saw the mess. Allan can't account for what happened. I'm going to call back and say that the job wasn't completed, and now things are worse. I've already paid $153, and I don't want to pay $153 again. If the plumber is going to charge me all over again I will call elsewhere.

Still it was a nice day in spite of all this nonsense. I had lunch with my friends, and then my best friend and I went to the opening at our little Art Museum. It's just a tiny museum, but it's very good with some lovely stuff in it. And then Allan and I had dinner with my daughter, son-in-law and Favorite Family Member.

Now I'm about done for today. Birthday whoop-de-doo is over. I have to get it together to get serious about losing weight again. And exercise is vital if I am to regain my health.

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9/7/14 9:35 A

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Morning, all quiet on the Western Front. Temps creeping into the low 70's and no humidity. Today being the day of rest..... is my day of rest from yesterday. Be Safe today if out and about.
Catch up this evening!

Michele

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9/7/14 8:54 A

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Well! Wow! Sounds like a lovely day for a bunch of people.

We got your rain late in the afternoon. Yesterday was a big day at Penn State. Big football game. We aren't the least interested in Penn State football and only look at the football schedule to know when to NOT venture out into town. Still I was a great day for people who like football. I'm glad that their game was not spoiled.

We didn't have my birthday dinner yesterday because with all the football visitors it would be totally impossible to find a restaurant table. By this evening the last of the football stragglers should be on their way home, and we are going to a Vietnamese restaurant.
emoticon emoticon to me again today!

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9/6/14 10:39 P

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Laura, Irene ..... sounds as if today is a "keeper" all the way around. Oldest DD and I left here about 8:45 this morning, I 75 did not show heavy traffic till we hit Middletown. Got to the Event grounds around 10, skies cloudy with soft breeze. Then came noon...and the soft dropping of rain and the cold soft breeze for close to 3 hours. Sammie was in 7 events or classes and ribboned 7 times with Clover. Clover today was in a snuggle mood. Clover could smell those apples I had from McDonalds, so she got them as her treat after her events. She knows that when I'am be around her I have apples. It was a great day for both rider and ride.

Robert had company today while I was gone. His oldest Son made it a point to have his daughter and her Mother visit. In addition an old poker buddy dropped in as well. Tonight when we got home he was alert, smiling and happy. He told my oldest to drop in anytime, and keep me at ease and happy as well. She told him she, Ber and Sammie would do that but, that was his primary job besides doing what he could to help himself get better. His reply. " don't worry, I will."

Have a peaceful Sunday!
Peace, Love and Blessing! ..... Michele


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9/6/14 7:41 P

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Nice to hear from you, Irene...and hello, Michele. Today was a lovely day, and my daughter and I went for a walk at this lovely nature center today with two women from Curves and the one woman's husband. It's a marsh, and there's a bird blind in the middle of a field of cattails and sedge, and there are informational things posted about the wildlife there and the importance of this marsh. The information tells us how the little streams go through the marsh and on to bigger streams and rivers and finally to the ocean. We're part of the Chesapeake water source.

We walk through the marsh on a boardwalk. Otherwise it would be too squishy and wet, and we'd do damage to the plants and we'd churn up the water.

There used to be a marsh on the outskirts of Ithaca NY, and people were trying to preserve the wetlands. But in the end they filled the marsh in and put up box stores.

We got a phone call from our friends in Ithaca NY. They wished me a happy birthday, and we made arrangements to go up and see them a week from tomorrow. We haven't seen our friends in a long time. I want to get there before it gets too late in the season for old folks to travel, for one thing (I used to travel in all weather and in the dark - can't do that any more), and for another thing it is becoming increasingly difficult to get around with Allan. So many things we can't do any more...

Now it's evening and getting dark. I'm tired now and want to go to bed.
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9/6/14 1:37 A

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Hi team friends , sorry not to have been chatting for a few days , we are ok but I had busy week, craft group, book club , a friends visit and trying to sort out my own long term aims. I beat myself up when I have lost patience with Maurice , telling myself he can't help what he does, I should be able to stop myself from getting annoyed with him.
Laura you have your own problems, . Planning meals isn't easy and a big supermarket can be overwhelming. Sounds like your daughter understands how it is for you and being practical and helpful. Good for her. I am ok planning and doing on day to day meals and events . But do flap a bit when I am out of routine and fight tiredness a lot now. I am older than any of you , I never think or dwell on age. But I know I get tired faster now so am having to plan better and space chores out with a rest between them . It's one day at a time . One minute at a time really , have a calm weekend friends Irene

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9/5/14 9:43 P

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emoticon emoticon emoticon emoticon emoticon emoticon


emoticon with many more filled with health and caring. Robert's Birthday is a week from Sunday, the 14th he will be 79.

Michele - Northern Kentucky


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9/5/14 8:34 P

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Good to hear that Robert's day went okay. And I'm glad to hear that you're going to get away again this weekend.

Tomorrow is my birthday, #73. If it isn't raining my daughter and I are going to go for a walk with Curves through a nature preserve.
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9/5/14 8:25 P

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emoticon If we can not have Dreams, we would get nothing accomplished. At lest I wouldn't!

Robert had a good day today, he had three small meals and kept them down. Sorted the Laundry, walked outside and has napped from 2pm - 5:30pm and right now he's watching TV.

If everything goes well tomorrow morning will be heading up North with Oldest Daughter for Sammie's last competition for this Season. The only question tonight is, will it rain through the event?

Be Safe and enjoy the weekend! Michele



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9/5/14 5:05 P

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I'm listening and trying to learn. Ooooh, tomato juice with Tabasco sounds really great. But it won't work for me as a diagnostic tool because I can't belch. Or I should say that after all these years I belch maybe once a year.

I had a Nissen Fundoplacation back in the '90's because of painful acid reflux. The doctor expected me to have a number of years ahead of me and thought it was better to have the operation than to take drugs for the rest of my life. Allan had the operation a year before I did. He had Barrett's Esophagus and was pre-cancerous. At that time they only gave the operation to people who were pre-cancerous. But a year later thinking had changed. Why wait until the patient is in trouble? Do the operation and keep the patient out of trouble, and that's why the doctor recommended the operation to me.

It's great! No acid reflux at all ever since. But also no throwing up, and there was no ability to belch until a couple years ago, and it's still rare.

I've heard that a problem with aspirin nowadays is that it's coated and takes a while for the coating to soak off and the aspirin to do its job. I heard somewhere that it's better to crush the tablet so that the medicine is available immediately.

For me it's not the actual cooking that is unbearably stressful, it's the decision-making. I am handicapped, and I get decision fatigue and ego depletion very fast. But my daughter and I are going to try to address the problem tomorrow.

And yes, I feel guilt when I think about Allan and the nursing home. When is it time? Once I get the food problem solved the worst part of the stress will disappear. The question will be whether Allan is safe at home. We still don't know why he falls.

And now we know that we absolutely MUST have a plan in place in case something happens to me. I'll be seeing the doctor soon.

A cruise would be great as long as I have lots of dramamine.
emoticon
Another thing I'd like is to go to a luxurious Fat Farm. They'd diet me, but the food would be good. And there would be exercise every day, and yoga, ooh, and maybe a spa with pampering. And I'd come back lighter and exercised and feeling good...dream on...

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9/5/14 12:06 A

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I've always carried an A1c of 5.6, while in the hospital ( without stress of Caregiving ) I dropped below 5. Insulin wa cut in half by the Hospital Specialist or what ever he was. Low and behold once home every thing went back pre-Heart Attack. Once I saw my PCP we both got my Diabetes back on track. Now even with Caregiving an estimated A1c now is 5.8 which is where I like it. Cooking is not hard here. right now Robert needs the fat and calories, me I stay close to low carb and protein. I do look for groceries marked " Healthy Heart " and use Miss's Grass Seasonings. Robert rarely use salt so that's in his favor. When I start to have discomfort below the shoulder blades or mid rib cage in my back, I'll put an aspirin 325 mg under my tongue or fix me a tomato juice with tabasco. If I belch with that I know its GI. If I don't belch its a Nitro and a phone call. It was the stress of Caregiving that put me in the Hospital and with the help of my PCP and Cardio I'm better able to recognize what's going.

You, I, Irene and other Caregivers need to take care of ourselves. No one else in our abodes is able to. I use to feel guilty of thinking about Nursing Homes, Robert understands that no one else is around to help Him. Now with his Lung Cancer that Guilt occasionally creeps back in. Now though we both are aware just how far we can go!

I know your not able and neither am I but, doesn't a Cruise emoticon sound great.
Michele

Edited by: MICHELE142 at: 9/5/2014 (00:08)
Michele - Northern Kentucky


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9/4/14 11:12 P

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This little holiday in the Hotel on the Hill (that's what my family calls the hospital) was a wake-up call for me. I told the doctors and nurses that I'm dying from Terminal Caregiving, and while I was joking, it's not a joke, it's true.

I've been looking over what I do and what the sources of stress are. And I looked at when I turned the corner and started going down.

I was going up until the end of 2013, and then I started going seriously down in early 2014. All the health gains I'd made turned around. I lost all the strength and endurance I'd built up, and my A1c soared. It was down to 5.2, and it went up to, uh, 5.6, if I'm right. I believe 5.7 is pre-diabetic.

I'd brought my A1c down from 6.1 to 5.2 and had beaten pre-diabetes. But in just a few months I'd reversed all my gains and was on my way back to being unhealthy and in danger of diabetes.

I asked myself what is the stress, the really dangerous stress here. It's providing meals.

I can change bandages (and I taught a Real Nurse at the hospital a trick I came up with when changing a leg bandage and putting on tubigrips) (and I told a nurse at the Wound Clinic about this, and I think I'll tell the other nurse this next time we go, which is Monday), I can take Allan to multiple doctor appointments, I can take him to the hospital, I can manage his medicine.

The only thing I seriously CANNOT DO is provide proper food. And the stress from this inability is crushing.

I have ADD/ADHD, as I believe I've already said. I've lived with this nasty disability all my life. I get so angry when I hear people say that there's no such thing as ADD, that it's an imaginary disease invented by drug companies to sell more medicine.

I looked at where the real trouble is. It's not putting the food in the pan and turning the stove on.

It's in PLANNING. And in CHOOSING. With ADD, that's exhausting and devastating. Having to plan sodium-light meals blew me away. I was so depressed. I'd stand there in Walmart and want to cry. Everything was full of sodium. I couldn't cope, couldn't think, couldn't deal with it.

And I'd default to the easiest things I'd done before, but the repetoire was so small, so few things. What shall I do? I can't count the times I was standing there in Walmart (or Giant, or Weis, or Wegman's, or whatever store with a can in my hand wanting to cry but not doing so in public.

I read most of a book by a researcher by the name of Baumeister. He talks about Decision Fatigue and Ego Depletion in his book. It's a lousy book, actually, and there are two authors, one of whom is a journalist, and there's far too much garbage in the book.

But I did get about two pages, or a very short chapter, of useful information. There really is such a thing as Decision Fatigue and Ego Depletion. I thought about this and realized that people with ADD/ADHD get fatigued and depleted much faster than other people. (I wrote to Baumeister, and he had no clue about ADD/ADHD and whether people with this deplete faster than other people.

Having to plan low sodium meals blows my mind. I can't deal. My brain fries. I fall apart, I'm not there.

My daughter is coming over on Saturday (which also happens to be my 73rd birthday) and we're going to Make Some Decisions. And we'll write them down. There they'll be, so I don't have to blow my mind and stand there in Walmart wanting to cry. We'll work out a menu for two weeks, and we'll have a whole list of go-to things so I don't have to get all bent out of shape standing there in Walmart wanting to cry and internally howling "What shall I do???"

I feel better now that my daughter and I have made this decision. I feel so much better. I have such a wonderful daughter, I feel so lucky to have such a great person as my daughter.

I know two women who are estranged from their children. It's so sad and so painful. I feel so lucky to have this really swell daughter and to have such a super relationship with her.

Yipes! Look how late it is! I have to go upstairs now!



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9/3/14 9:13 P

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I was thinking about you today. I was thinking, I don't want a heart attack. I drove myself to the hospital, and found myself comforting my heart, saying, Yes, Heart, I love you, you work so hard to keep us alive, we're on the way to get help and make sure you're okay and take care of you if you aren't...
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9/3/14 9:04 P

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You have an appointment with your Cardiologist, some advice from someone who waited to long... move that appointment up. even with you passing a stress test. What's that commercial. A Heart Attack does not announce when and where! Move that appointment up, don't let things sneak up on you or get worse!

Edited by: MICHELE142 at: 9/3/2014 (21:06)
Michele - Northern Kentucky


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9/3/14 8:47 P

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Wow, Michele...I feel for you. You have good reason to be tired and depressed! And I agree, morning came early today, and now it's time for healing sleep!
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9/3/14 8:42 P

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Today is my day to be; tired, disoriented and down right depressed. Today Robert had his 2nd chemo ( which is said to be the hardest on the body ). Yet so far no GI or gastric problem to right now. The only thing I have noticed has been his heavy breathing with activity and His oxygen Saturation tonight was 96% down from 99% six months ago. Let's add also a weight today of 123 pounds which is down 3 pounds from last Wednesday. This guy has started to eat since last week and he has lost. Doc told him today it was Cancer eating before he has a chance to metabolize that food for his body. He told him to try 4 to 6 small meals a day to start building some muscle mass he has lost. No chemo next week, so he has at least to weeks to show some weight gain.

It maybe early but 6 am came early this morning, so got my pillow and heading to bed.
See ya'll tomorrow! Michele

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9/3/14 8:35 P

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Okay, so I said that Allan was in the hospital. Same ol' stuff, edema, cellulitis and infection in his legs. He went in, stayed a while, and on Monday I brought him home.

On Tuesday I didn't feel well. I'd been having pinchy feelings in my chest, and tightness for some time. I know that women's heart attack symptoms tend to be different from men's. I was feeling pretty crummy, and while I do have an appointment with the cardiologist in January, for some time I've been wondering if I should wait that long.

With the encouragement from a nurse over the telephone I went to the Emergency Room for a cardiogram to see if something was wrong. Well, I not only got a cardiogram, I got an X-ray and a blood test.

Everything was fine except for something dodgy on the blood test. There was an enzyme that was kind of high. If 5 was the bad point, mine was 4, so the doctor recommended I be admitted for observation.

My daughter, bless her heart, stepped in and took care of Allan, gave him his medicine and stayed over in my bedroom just in case something went wrong.

I was in the hospital, and I slept maybe only three hours, because they kept waking me up to poke me and prod me and stick a needle in me.

Then today I got a stress test, which I passed with flying colors. I did better than any other old lady about to turn 73. And over the night the enzymes got back to normal. And I got to come home this afternoon.

I'm tired now and want to end the day. But we learned some things today. We're concerned about what to do if I suddenly have a car accident or something goes really wrong. The doctor and I thought we had a plan, but it turns out we're going to have to start over and come with with a better idea.

Between the two of us it's been a week of the hospital. I've had enough!
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9/3/14 8:18 P

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Guy Fawkes Day! Yes! I may have already posted about this, how my best friend's English cousin came to visit, and we had a little Guy Fawkes celebration. We didn't have a Guy to burn, but we had a bonfire and sat around it and had hot chocolate.

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9/2/14 9:38 P

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Irene ..... though Britain celebrated something similar to our Halloween like; All Hallows Eve, All Saints Day or perhaps I'm thing about Guy Hawks.

Michele - Northern Kentucky


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9/2/14 9:05 P

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Middle of night huddle again , I am ok,
Yes May 1st is a European labour holiday but in UK it's a centuries old holiday just.mayday. Celebrating the season with some very old customs like dancing round a Maypole. Sometimes the original reason for a holiday is forgotten and people are just glad of a day off work, no more holiday here now till Christmas ,
I am getting out as much as I can before winter comes and while Maurice is ok to leave. I had book club and craft club this week. A friend is visiting tomorrow, Maurice knows her and usually will go in the hobbies room to leave us to talk.
Generally now I am trying to concentrate on what he can do not on what he can not do. I was saying I had ironing to do. He offered to do it saying he likes ironing. Does he? Why has he never done any before? Anyway I accepted and set him on ironing and he did ok. I hope he remembers that next week,
I didn't agree with something last night so again he was going to leave me, briefly ! I I said I will show you were the bags are , and he sat down again , I left it a while then said you aren't going any where, I am not either so we have to accept each other and get on with it. That's life. I am grateful for family friends and my hobbies. Enjoy your day , Irene

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9/1/14 9:18 P

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Allan is back from the hospital. Ho hum, here we go again. Today was Labor Day, so the pharmacy was closed. Ummm, Irene, do the English people celebrate May 1 as Labor Day? I thought some European countries celebrate May 1.

So tomorrow I will get his medicine. I'm tired now...

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8/31/14 8:12 P

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Allergies, can't live with them and can't live without. Seems that each Season brings a different allergy. Seems allergy medicine permits me to walk around in a fog. These last three days has culminated in one huge Headache. Today, Robert is not helping that headache one bit, just putting on the pressure...he is!

Have a happy Monday! ... Michele

Michele - Northern Kentucky


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