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8/26/14 2:04 P

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I'm not sure about anyone else, but Denial of what will happen is where I'm at right now. ( The only Fear we have is Fear itself....FDR ) Only I can work through this. Alot depends upon Robert doing his part as well. To me it will take some decline in his Cancer to ease my periods of Denial. Tomorrow is his first dose of chemo!

Enjoy this week! Michele.



Edited by: MICHELE142 at: 8/26/2014 (14:04)
Michele - Northern Kentucky


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8/26/14 1:20 A

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Hello on Tuesday, I have been catching up on what you are doing,
Laura I think you know what has to be done. You need a break and it's not like you are trying to put him in a dreadful place, they will care for him more than you can now. Maurice isn't ready for that yet, he's just walk out .
I can cope at home for now. He's not been too bad lately, I had a vertigo bout and it worked him if I am not well, seems to make him do more and try to help me too,
I haven't been out for days ,I feel I do need to get moving again now my head isn't spinning round from vertigo,
I have some financial dealings to do and I hate that . I said I am on my own , no one to help me so I shall cope. He told me I am not on my own he will help, bless him ,I wish he could . He thinks he can. Have a calm day, Irene

Irene in Nottinghamshire UK
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8/25/14 10:48 P

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Do you think we're looking for the light at the end of the Tunnel.......the pot of Gold at the end of the Rainbow..........or just peace and tranquility? Personally it's all three. At the top of my list is Peace, Love and Blessings. Sometimes I can not remember having all three at the sametime.

Robert is still sleeping frequently and energy is low, it is hard to determine between the COPD, Anemia an Cancer which one is the culprit. What I'm really wanting for Robert is for him to see the light at the end of the Tunnel, in any way that makes him happy and peaceful.

Michele - Northern Kentucky


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8/25/14 9:45 P

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And another thing. It's so NORMAL for things to be always wrong. It's normal for me to live around someone who can rarely carry on a real conversation. It's normal for me to be with someone who cannot take care of himself, cannot manage money, cannot schedule his day, cannot keep clean (he needs his fourth bath of the year - I have a dirty old man here), cannot manage daily living...it's so NORMAL, it's so normal I've lost sight of what is healthy and what is not. NORMAL NORMAL!!!

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8/25/14 9:41 P

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Bit by bit the nursing home creeps closer.

His and my doctor. We have the same doctor. And the doctor and I are on the same page.

I've been thinking. A temporary stay in Centre Crest (within walking distance from my house so I could combine a daily strenuous and healthy walk with a visit) might well restore some health. Yes he could well come home and go right back to his old bad habits. Likely so. But it would also give me a badly needed break. And with luck I might be able to make enough changes that I could take somewhat better care of him if/when I got him back. Specifically the food issue.

If he could lose the edema bloat and a good bit of obesity fat and get able to walk - mall walking or the school walking they have here - it would be a big deal. How long he could keep improvements up I do not know. But I do know that we are in trouble now. He doesn't realize it. All he knows it that I love him and give him totally loving care, and for him that's good enough. He has me, he has his TV, he has our cat who snuggles when we watch Dark Shadows videos together. He's content. I'm the one who stresses because I know he doesn't get the right nutrition, that I can't get him to do the exercise he needs, that he really needs to lose weight - he's obese and it prevents him from doing things for his health.

He thinks he's fine because I give care with love. But I know I can't do things right. I know I'm failing. His health needs are too big for me. Never mind the dementia. His physical health is a big deal.

The nursing home sneaks a bit closer...

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8/24/14 10:22 P

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emoticon You know what would happen with a temporary placement. Talk with yours or his doctor before you make any descision. You owe it to yourself and your family.

I received this from my oldest this morning, " Trust in the Lord with all your heart and lean not on your own understanding but in all things acknowledge Him and he will guide your steps. "

Michele - Northern Kentucky


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8/24/14 9:17 P

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Today I had a nice visit with my best friend. We talked and talked. I'm struggling with the decision whether or not to put Allan in the nursing home. And if so, permanently or temporarily. Although his dementia is not as far along as some people's is, the fact is that his health is really bad, and I'm only a Play Nurse and a Play Doctor. He has more going on than I can take care of.

It's not time yet, but I will consult with the doctor. The nursing home here does take people temporarily, and they would give Allan healthy food, and they'd get him out of that bed and get him moving and walking in an appropriate manner and doing physical therapy. They'd get him to bathe and brush his teeth. They'd likely feed him so that he'd lose weight, both the fat and the edema bloat. They could get him to wear the leg compression things. They could do things I can't do myself and get him to comply in ways that I can't.

The question remains, what if the nursing home gets him healthier, able to walk reasonably well, 20 or 30 pounds lighter, and no longer all bloated and nasty from edema - and then they send him home and he goes straight back up to his room, turns on the TV and refuses to walk or bathe or use his leg compression, goes right back to all the old junk, regains all his weight and blows up like a water balloon and refuses to comply?

And I will still have my own handicap, my own disability that makes it next to impossible to take care of him properly.

I don't know what to think. Once I get a chance I will talk with the doctor.

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8/23/14 9:12 P

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Right now I'm burned out and tired and ready to end the day. I have nothing useful to say, only that I want to check in and say that I haven't forgotten you. I'd better post in the morning, because now it's bedtime and I'm fried.

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8/23/14 2:00 A

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Tiredness is bad any time but especially when there's take we have I do and can't just switch off. Yep that is A getting words mixed up Maurice often does this, he won't accept there's anything wrong with him. I have said before I can cope with memory loss and confusion , nit anger as he does battle with me over so many things, I can understand yes frustrated , this week it was I was keeping something form him, he was sure if this and demanded to see bank statements and all official mail. Centianly I you can everything is in a file for first time ever , it's only way I can cope,. Then he is examining every bit of paper I throw out as it may be important, it's not use doing battle over it, I let him get in with it ,
Carers assessment was queried, I wasn't sure myself , I looked it up and it's basically what it says . A carers registered officially. Fill in forms if course as to what duties they do, also can they be offered any help. No financial help unless you are on social benefits , which we are not as M has a pension from his job. It's practical help, but at this stage I can't see there's anything anyone else can do. Day care has been suggested, he would hate it and walk out if he could. But I haven't had this assessment yet, I will let you know, have a calm weekend , I do find it best to let the Maurice do as he what's unless it's harmful , I can't make him eat or not eat something or drink more water , move more etc, he is 85 after all I am going for the easy options for myself when I can . It's only way I can cope. This week he was going to buy a car again, it just won't happen so I don't argue just say yes ok,
Byee Irene

Irene in Nottinghamshire UK
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8/22/14 9:30 P

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Tired is becoming an everyday word around here. The last two nights we have been awaken between 2 & 3 with loud and heavy thunderstorms. Loud enough not to let one fall back to sleep until it moves on. So when my alarm sounds, I turn it off and roll over. thus I'm 2 hours behind on my ToDo list. So far today we have had no rain, so within the hour this tired person will be i bed!

Have a better day tomorrow! Michele

Michele - Northern Kentucky


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8/22/14 8:54 P

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Hello, Michele...that's what I get for writing at the end of the day when I'm tired.

I've heard of this weird post-operative dementia before. I should look into this. Allan has had lots of surgeries, and that could be part of it.

I'm so tired now! I want to stop for the day!

Another incident. He wanted a pizza, so I got him a small one without peperoni and hopefully with less salt. When I came back up, he'd eaten the cheese off the pizza but left all the bread crust. I said, "Huh, what are you doing? Why the pizza crusts?"

He said, "I never eat the crust. I only eat the cheese."

This is the first time this has ever happened. And it's a day (or two?) after the word mix-up. His brains are really fried.

Problem is, I'm so used to it. It's normal now to be around someone who can't function. It's normal to go to a restaurant and have him not comprehending what to order. Impaired functioning is natural and everyday to me now.

So if a doctor asks me how he is, well, I have to think. I no longer know what normal is.

I'm so tired! So tired!
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8/21/14 11:26 P

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Yep, that sounds like Alzheimer's. Yet don't be surprised when you check out Vascular Dementia you find yourself more confused......Watched a video today from Health Share that explained a type of Dementia that happens post major surgery especially people over 65 i.e. hip fractures or long bone fractures, any major surgery. The type of Anesthesia and anemia seem to
cause this post-op syndrome. However, Bob has had 2 major ortho surgeries a year apart and is still having trouble remembering, the anemia being chronic. If Bob was not starting chemo I think I would ask his PC for either an MRI (can tell if Alzheimer's) or an EEG to check for dementia and brain function.

My major concern now is his Lung Cancer of both Lungs and how well he can tolerate Chemo. He has not had any mood swings since he was diagnosed and that is a good thing.

Have a better day tomorrow! Michele

Michele - Northern Kentucky


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8/21/14 10:44 P

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Who's the doctor around here? I am, that's who!

I won't be the least bit surprised if they diagnose Allan with the Big A.

At the behest of my therapist we went online to look at symptoms, since the idiot neurologist had had nothing useful to say. We found a list of the stages of Alzheimer's and the symptoms at the various stages.

I gotta say, there it was. Tomorrow if I have time I'm going to research vascular dementia to see the similarities and differences, and try to get a handle on what's happening here. Is it vascular or Alzheimer's or both?

One of the symptoms of the Big A is getting words all garbled up. The patient can't remember a word, and substitutes an unrelated word.

Today I heard a thump in Allan's bedroom. I'm pretty used to the sound of his dropping the cane. And I called out, "You okay? Your cane?"

He said, "I dropped my cane. And I dropped the stone...."

The stone?? The stone??

I went into his room to see what this stone was. He'd dropped the cane, and it had fallen on his shoes (on the floor, he wasn't wearing them). He kind of mumbled, "Dropped my cane...fell on the stone, uh, my shoes, uh, stone, shoes, forgot the word..."

Um...uh....that's Alzheimer's.....that's something people with Alzheimer's do....

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8/20/14 10:02 P

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Busy day spent at CTC, lunch out, errands ran once Bob was home and settled in. Appointment next Wednesday for treatment so another busy day. Tired so to bed I go. Have a better day tomorrow! Michele

Michele - Northern Kentucky


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8/20/14 8:46 P

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Heavy depression today. I'm tired and want the day to end. I did call the Elder Law lawyer and did make an appointment. I did discuss the situation with my therapist. But now I'm really tired and discouraged.

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8/19/14 9:36 P

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Oh, Michele! I get that chemotherapy can be miserable and make the patient feel really sick. A long time ago around here it was necessary to go to Pittsburgh (we're talking a three hour or more drive) to get chemo. This was back in the '60's. Now in the 21st century it's available here.

I feel for Robert. My aunt had pancreatic cancer and they gave her chemo. It was so miserable she said she'd rather die than go through it. But then they came up with a way to inject the chemicals directly into the tumor rather than the entire body, and she was able to do it. She did gain some time of life doing it this way, and I was able to see her one more time before she died.

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8/19/14 9:28 P

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Oh Irene! In England like in America! In many ways we're drifting along on our own just as you have been. I'm waiting for a while (and if I don't hear, I will have to pursue things) to get back to the big fat hospital and see if they have any more information about what is going on with Allan.

What is this "carer's assessment"? I feel as if I'm alone for the most part, having to figure out on my own what is going on and what to do next.

I'm realizing now that another thing that is bothering me, perhaps even more than what on earth I am to do with Allan and how to take care of him, is the fear that I will be a burden on my daughter. Soon I will turn 73. I'm not young any more. I can't guarantee that I won't go senile like my grandmother. Will Laura Johnson Junior end up like Laura Johnson Senior? When my grandmother was my age was she beginning to lose it? In some ways I'm losing it, but I don't know if my being forgetful and cranky at times is due to early Alzheimer's or to being tired and depressed from all this caregiving.

(I do know I have no patience with stupidity. We were at the Neurologist, and the nurse gave Allan the standard test they give everyone. What day is it? Allan looked at his watch and said, "Friday", which was correct. I howled, "He looked at his watch, and anyway, every day is Friday to him!!" And what month and year? He said August of 2014. I howled, "Hey! Right there is the calendar in plain sight where anyone can see! This is no test! Do the damn test right!!" The nurse turned the calendar over, but it was too late. The test had already been compromised. And she asked the same stinkin' questions she always asked. It's more of a test of how you remember after doing the same thing over and over than it is of short-term memory. Spell "world" backwards. "dlrow" C'mon! It's always the same thing. Over and over. Allan has had the same stupid test often enough that it's automatic now, and they don't realize just how bad his memory is. I've totally lost confidence. I won't pay any more attention to neurologists unless they have something radically different to offer.)

(I'm such an angry bitch. The next time we go to a neurologist and they ask him to spell "world" backwards and he comes on with "dlrow", I am going to angrily interrupt and offer him a different word and see how he does. Oh wow, am I snarky and angry these days!)

We caregivers are on the front lines, and we have to learn how to interact with doctors and bean counters and other "care providers".
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8/19/14 11:07 A

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Irene, what a fortunate encounter you had. Sound like you met up with a professional that knows something about A. Hope you can get some answers.

Another part of my Life with Robert starts tomorrow as he starts his chemo. Guess its true when one door closes another one opens. Tomorrow will be rough on him as he has asked no questions about his chemo treatments. He is of the impression that he will see the oncologist, get a shot and leave for home. That will not be the case, he will be there anywhere from 2 to 4 hours for his chemo. I can hear him say, no way. Yet, hopefully he will give it a try.

Blessings to all! Michele

Michele - Northern Kentucky


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8/19/14 2:28 A

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Frustration is the word today on our threads. We do our best but sometimes feel we are not getting any cooperation from people who are paid to help us with correct information etc,
Last night I was at a quiz evening a fun friendly event.
Over refreshments we were chatting and one woman asked how my husband was and was really interested. She was asking intelligent questions then gave me her card. She is the manager for this area dealing with mental health in adults , oh ? She wrote done a few things and told me to give it to our doctor asking her do a few things re my husband, I asked will she take note, ? She better had she told me I am the boss,. She was shocked I hadn't had a carers assessment and no follow up on initial diagnosis of A had been done, she commented so you are left to drift along on your own.? Basically yes, so now I am going to make a doctors appointment and see what will happen now Irene

Irene in Nottinghamshire UK
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8/18/14 2:36 P

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Yes, "senile" was the word I'd heard. Grandma was senile, so my Dad said. We didn't use the word "Alzheimer's" in those days.

And there weren't the resources available then that there are now. I wish my parents had been able to access all the information we have now.

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8/18/14 9:02 A

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In the very beginning the word senility was used for memory loss, Senility progressed to Acute or Chronic Brain Syndrome and several years later the Word Dementia was used more and more. From Dementia, this word slipped into a for runner for Alzheimer's. Frankly you can talk with different doctors or read different medical books and never come out with one logical answer. Perhaps the best answer would be the legal definition of Alzheimer's.

The hardest part is finding that doctor that tells it like it is with no sugar coating. That's not easy. Seems law Suits are in the back of a few of their minds Getting an answer seems to be a thing of the past.

Michele - Northern Kentucky


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8/18/14 7:26 A

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My understanding is that dementia is a symptom. Dementia, so I've read, simply means that cognition is impaired.

Alzheimer's is a disease. Dementia is caused by many different things, and some dementia is reversible, while other dementia is not. Alzheimer's is the most common cause of irreversible dementia, so I'm told, and vascular dementia is the second most common irreversible dementia condition.

Reversible dementia is another thing. Dementia can be a side effect of some kinds of medicine, and if the medicine is stopped the dementia is stopped. Going through severe stress in an ongoing situation also produces dementia, dementia which will go away once the stress stops. Being tired impairs cognition, and after a good night's sleep the cognition will be back in working order.

What did they teach you, Michele? You say that Dementia leads into Alzheimer's. Did they say that this is always the case? If there's dementia, Alzheimer's will eventually appear necessarily?

I know that I get mild dementia. When I'm tired and depressed and stressed and surrounded by clutter and feel absolutely burned out, I don't think very well, and I forget more. But when I'm at one of my book clubs or visiting with my friends, my brains work fine. But I don't know that I absolutely will get Alzheimer's in the future because I can't think well when I'm tired.

As for Allan, it appears that at present his dementia is vascular. The beginning of Alzheimer's is possible. But that doesn't really tell me anything. (Shucks, Alzheimer's is possible for me, since my grandmother most likely had it.)

There's an easy out for Allan. He does take heavy opiates for pain, and it is easy for the doctors to stop right there and blame the pain killers. There's a possibility that they may look no further. They may say it's just the opiates and stop there, not bothering to look deeper. I will have to explain that the dementia didn't start with the opiates and that I want a more detailed explanation.

Yes, I will try to have good questions ready. Later today I will call and make an appointment with the Elder lawyer. I really need to know what's going on.

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8/17/14 10:01 P

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Laura, those hospitals have their Hippa Law that allows a patient to refuse to anything they do not want to do. He has not been declared incompetent, correct. Therefore, he has that right to refuse. However it would not hurt to see a Lawyer who specializes in the elderly. All caregivers need to have an understanding of what is expected of them and what they can and can not do.

Google the heck out of Dementia and load yourself up with info before you go back to that Big Fat Hospital. You could also look on...WebMD.com or Doctorondemand.com for Dementia and how it fits with Alzheimer's.Just a suggestion I was taught the Dementia leads into Alzheimer's. Michele

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8/17/14 9:18 P

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Well, I'm sure a grouchy one!

We went to the Neurologist, after waiting and waiting to hear the results of the test. This woman had hardly anything to tell us about it. He has mild dementia.

Mild, I asked? What's mild?

Not severe, she sez.

Umm, what's not severe? Well, uh, it's mild.

Didn't tell me a doggoned thing! And what were the results of the test? She didn't know. Possibly vascular, which we'd already heard, and maybe the beginnings of the Big A.

I explained (in what I suspect was a rather cranky voice, because I'm getting mighty tired of incompetent people) that the doctor at the big fat hospital an hour and a half away had told us that she (who is local) was to tell us the test results. But somehow she really didn't know, and said we could go back to the big fat hospital and find out.

So now we're waiting for the big fat hospital to give us an appointment. And I'm wondering, Why bother??? Does anybody have a clue what is wrong with Allan? Am I, as the caregiver, the one person who does see him from day to day, the only one who knows what's happening?

I'm disgusted with neurologists. The professional I really want to see now is the Lawyer who specializes in Elder Law. I want to know just what constitutes Elder Neglect and what my responsibilities are legally.

I've been respecting Allan's wishes. He doesn't want to use his compression pumps. He doesn't want a shower. He refuses to go for a walk. Am I neglecting him because I don't try to force him to do what he does not want to do?

So far he hasn't been declared incompetent. I was hoping that the neurologists could give me some idea just how things are and whether or not Allan is legally still competent to make his own decisions about what he wants.

I don't want to spend the rest of my life serving hard prison time for Elder Neglect, and/or losing all my assets in a fine and/or both of the above. I don't know if Allan is competent under the law or not. I don't know what I'm expected by the law to do.

I do know I'm tired and want to go to bed now.
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8/17/14 3:43 P

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Irene, at least you have the capability of handling those little problems that can turn into a major deal. So far this week Robert has been spending his time recalling the past, and thinking about the mistakes he has made in that past. He really has not bothered to ask any questions concerning the starting of his chemo this coming Wednesday as of yet. I have noticed a cough that he says is just a tickle. which it could be. Each day with him now is one to be enjoyed, one never knows what each day will bring, Have a Blessed week! Michele

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8/17/14 1:26 A

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Hello I was awake from 3 3o am today and got up at 5. Doing some thinking while it was quiet. It's been a big A week which is hard to deal with. My mother had dementia but was calm and docile and would just do what she was told to do, unless she wanted a cigarette! But
Maurice is fighting it all the way and wants to do things he's always donee he argues and disagree with me over most things which makes it so hard to help him.
One thing this week was he suddenly told me he wanted to go and look at the town where he lived and went to school. Well it's not that easy with out a car and any travel is a problem now, but I just said we will look into possibilities but he wanted to go NOW.
I had a brain wave and looked up the town on my I pad and gave it to him to look at. He loved that and was saying how the town had changed. So I took that up and saying he wouldn't know it now , the house he lived in and school he went are probably not there . Um he agreed on that and no more mention of visiting there.
But then he wanted an I pad of his own , yes maybe . Why not Now ! Again .
I said it's not that easy, they are not cheap and would mean travelling to the city.
, I know it would be a five minute wonder and it would hardly be used and they aren't cheap , so am hoping he forgets that. But isn't it strange how they forget so much except the things we want them to forget .
Yes getting our loved ones to realise they need help and accept it can be a battle, I feel exhausted now as it's been many mini battles all week.
Thank got letting me unload onto you , keep well . Irene

Irene in Nottinghamshire UK
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8/16/14 10:11 P

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Robert lately has told me what his mother would do when he was little...and not feeling well.
Trying to get him to remember that is the hardest part. Basically, Macho Man when ill, to me, revert back to those childhood days and mother.

Right now Robert has a support group of six people wanting to help and waiting for him to just let them help. Robert has always gotten his emoticon and Kisses whether he has been bad or good. Michele

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8/16/14 8:37 P

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Michele, what is it with these men?

Allan used to be so macho and heavy-handed. But underneath the macho exterior he was terrified and in need of a strong and stable partner.

And these days Allan is also a loveable, huggable Teddy Bear, too.

I wonder if men have a burden to bear, to be so strong and macho and powerful, and they aren't supposed to be frightened little boys. Society expects men to be so big and strong.

And now Robert has to face Cancer and Death, and he has to face these things with diminished capacity.

Hug Robert, when he's being huggable and not abusive.
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8/15/14 10:29 P

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Right now I have a scared and fearful Macho Man who seems to periodically tear-up. At times since last week he is just a Loveable, Huggable, Big Teddy Bear! One never Knows does One!

Michele

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8/15/14 10:19 P

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Hello, Michele...yes, Allan would get ugly and hateful and awful, and I learned over time that the thing to do was to go away and leave him alone for a while. Yes, the mood would change for the better.

Now, Allan has serious Borderline Personality Disorder. He's gotten way, way, much better with advancing age. But I also credit myself with doing major homework and research and reading and learning about Borderline and figuring out just what it is that he needs (security, stability in his environment) and providing that atmosphere for him.

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8/15/14 10:04 P

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Laura....and when you went away and returned had the mood changed?

Michele - Northern Kentucky


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8/15/14 9:52 P

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Hello, Irene...I feel so bad for our dear Maurice. It's awful, I'd think, just awful to find oneself becoming unable to do tasks that used to be easy and part of normal life.

In the past I volunteered at a thrift shop. It was Ruth who taught me what to do. But then the years passed, and we all got older. I knew something was wrong when our dearly loved Ruth asked me, "Now, Laura, how do we do this?" She taught me to do this, and now she's forgotten. And I knew something was wrong when Ruth wouldn't show up for her shift, or if she'd show up when she wasn't scheduled and was confused as to when she was expected to do her work. I said to the Volunteer Coordinator, "Just schedule a second person for this shift so that someone will be there in case Ruth forgets."

This is scary, for both the people around the loved one and the loved one who is feeling confused with what used to be familiar things.

I think I told you the story already. (I'm an old geezer now, and I forget what I've said or not yet said.) But in case I didn't, Ruth's son and daughter-in-law were professional dancers. Ruth said, "I want my son and daughter-in-law to dance at my funeral."

Our dear Ruth got her wish. Ruth moved into the nursing home, but she wasn't there long before she died. There was a Memorial before the actual Church Service, and sure enough, her son and daughter-in-law performed a beautiful tango, very elegant, very serene, very serious. I was sitting there with tears flowing uncontrollably from my eyes - I loved old Ruth dearly - and this dance was so loving, so respectful, so thoroughly appropriate.

Yes, Irene, I can agree with you. Allan used to get angry and cranky and I found that the best thing for me to do was just leave for a while. Just go away for a time, and the mood will shift.

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8/15/14 9:40 P

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emoticon

To day this went through my mind, " there by the Grace of God go I." Would he care for me?
He's wearing is favorite T-shirt today, " It's not an Attitude-- I'm just always Right!"

Have a Blessed Weekend ! Michele

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8/15/14 9:22 P

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Oh Michele...I, too, asked, "Why me?" And the answer came back., "Why not you?"

Okay, why not me? And like you, I've had time with Allan, and he trusts that I love him. It isn't easy. But then Life never came with guarantees anyway.

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Afternoon ....... got up this morning having a good ten hours sleep. robert let me sleep mainly so I would not find out he has been nauseated from the dye used with the PET scan. Yet, he had to wake me up anyway for something to help! I told him that he is not the only one to have some problems with the dye. He had not eaten, so gave him an Ensure to help coat the stomach and reduce the acid in the stomach. At least now he is quiet and trying to nap. I know he is scared even though he talked with his PC on Tuesday. Frequently he will talk about the past an mistakes he has made. I know he does not want answers so I just listen. As I listen, I'm getting the answers I need to help me through what he is facing now and down the road.

Tomorrow is never promised! Michele

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8/15/14 1:54 A

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Hi on Friday I had a busy few days , main thing was trying to make sense of lots of old paperwork while looking for bank books , what a job it was,
Mauruce wanted to do it himself and without any help, so I got on with other things and could see he wasn't coping . So gradually I started to help and took it all over.
On my big problems is M wants to do things himself and fights me all the way over me helping, I have to say .WE can do this let US do this . So he thinks he is involved.
I did find the bank books .
Yesterday he had a bad day not understanding things, getting angry and constantly asking same questions . I had to go out for a while, I do find that's best now and leave him alone. Usually when he is quiet and calm and keen to offer help ,
Yes it is a new great grand child we now have . Joseph was born on ,.13th weighing on at over 10lbs . They came home from on 14th . The same day as the new fathers sister rang me to tell me she and get husband are expecting a baby in
January , the babies will be cousins . Certainly is new baby time ,
Hoping for a quiet calm weekend now,
I think we all know it's one day at a time , not too much planning ahead and glad we can unload on here and learn from each other ,

Irene in Nottinghamshire UK
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8/14/14 11:00 P

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Used the time I had during Robert's PET scan to relive the past 21/2 years. Began feeling and thinking just how I would feel if he were gone. Always wondered " why Me " when things with him did not go well. Answer; I had that time with him no matter what the circumstances. He had someone with him that he trusted and knew well and above all Loved Him as isl. Lately his mood swings have just about diminished yet, he is scared and afraid of his future. As well as I.
His Chemo starts next Wednesday and we will also know the results of his PET scan done today. One thing we have not talked about is the length of infusion of his chemo and how many days a week he may have his chemo. I'm hoping at first it will only be 1 day a week till his weight picks up as well as his strength.

The present circumstances have given me newer insight in " tomorrow is never promised ".

Michele

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8/14/14 9:10 P

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I don't know what to say about anything right now. Maybe there isn't much to say at this moment. I only know right now that I'm glad we are here and know that others are dealing with the same sorts of stuff we're dealing with. I'm just glad there are other caregivers here.

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8/13/14 10:21 P

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Cancer's coarse can and often is a 50-50 proposition. We are having a PET scan tomorrow to see if the is any progression, A Double Chemo starts next week. There will be not radiation until the massive tumor show shrinkage and his weight and Lung function increases. Everything at present is in God's hands. WE just have to figure out how to help Him.

Long day today and a longer Day tomorrow. Feeling same time my pillow has forgotten me!

Blessed are the meek as we shall inherit the earth Michele

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8/13/14 9:28 P

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Oh goodness, Michele...now you have this lung cancer treatment to deal with...our Jazzercise instructor's husband got lung cancer, too, and we're all so concerned with the progression of this disease, and the chemo, and now more chemo, and we're all Not Saying how all this can turn out.

All I can say is that I sure have empathy. I sure care and hope that somehow all this will be bearable....

Really too tired now, will check in tomorrow.

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8/12/14 10:52 P

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Evening, ran again today....Tomorrow we have appointment with his PC and Thursday he has his PET scan done. I really do not mind driving to his appointments here in this county but, when they are counties away and interstates must be driven.....Hate to run those roads now more than ever. His Chemo starts the 20th of this month. Believe that will be an eye opener for him. After this week there are no more appointments till the 20th. So all I nee to do is keep him comfortable.

Blessings to all for the Week! Michele

Edited by: MICHELE142 at: 8/12/2014 (22:55)
Michele - Northern Kentucky


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8/12/14 9:10 P

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Grandson's wife, Irene? Then this is your GREAT grandson who is about to come into this crazy world and start his life! Congratulations!
emoticon emoticon emoticon
Hearing you talk about doing financial things reminds me when my father-in-law died (that was years ago, first marriage) and my mother-in-law had to learn how to write checks and do the financial things she'd never done.

Allan's dementia hasn't improved. My daughter was here this evening. So today is Tuesday, and back on Friday we celebrated her dad's 74th birthday. We all went to dinner at a Japanese restaurant, and Allan was there, too. This evening he was confused and asked Meri (my daughter) if we'd seen Joe recently (that's Meri's dad - although we're divorced we're on good and friendly terms, and he's on good and supportive terms with Allan). Allan had completely forgotten just last Friday. Ho-hum, so the dementia isn't getting any better, only slowly worse...

We see the neurologist on Friday, and FINALLY! Finally we'll hear the results of that testing that happened back, oh, how long ago? I forget how long.

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8/12/14 8:46 A

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Hi on a wet and windy Tuesday , we are getting the tail end of Hurricane Bertha sweep over UK.
I am home anyway today so I don't mind rough weather
Yesterday I had to do some financial dealings at the bank. I have never done anything like this before and was all worried and shaky, but I coped fine and kept to what had to be said. I was not after a loan or anything just seeking help to cope with money matters and move some savings to current account. Difficult when Maurice can't even remember having bank books never mind where they are, I am to keep on looking.
But later he did tell me I had coped very well at the bank , he was there but just as a watcher.
I had to explain it all to him later. I was surprised and pleased he told me I had done well . Did me good to know I can cope.
I am waiting your news of a new baby today . Our grandsons wife is being induced today as the expected baby shows no sign of wanting to enter this world and is a big baby . It's a boy.
Have a good day. Irene

Irene in Nottinghamshire UK
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8/10/14 10:23 P

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Time to wrap this day and put it to bed.and for me, line-up To-Do list for tomorrow. Plus questions for my appointment tomorrow,

Have a Blessed tomorrow! Michele

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8/10/14 9:31 P

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Oh, Irene, I can understand why you didn't intervene when your mother was smoking. There finally comes a time when there's no point in trying to make our loved ones quit an unhealthy habit.

If Allan wants to smoke, I let him. I say nothing. Let him have those stinkin' cigarettes. There's no point in trying now to make him do healthy things.

And yes, it's hard to take care of ourselves! I hear that junk, too. How about how when I'm on a plane I need to put my own oxygen mask on before helping other people put on theirs.

But I'm not on a plane, and there is no oxygen mask.

Good news for me, at least a little. I did get in my half hour walk today. I don't want to get diabetes. I have to exercise and lose weight. So I exercised, but I don't know yet how the weight loss will go.

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8/10/14 9:26 P

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Hello, Michele...I know when Allan has lit up because I find the cigarette butts. I don't nag him or tell him to stop, so he doesn't feel a need to hide his behavior from me.

Right now I'm confused and need to sort things out. I got an appointment reminder for some apparent appointment on Tuesday. But on the calendar in his bedroom is a scrawl about some appointment that day being cancelled. I think that was the cancelled appointment. Somehow the original appointment never reached me, never got on my calendar.

He'd had a diabetes appointment that was cancelled. I took that one off my calendar. But this appears to be another one.

Oh phooey! Don't EVER give this man a message! He can't tell me what's going on. I have phone calls to make in the morning to straighten things out!

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8/10/14 10:30 A

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Morning from KY!

Got to sleep late this morning and was happy to find that Robert had not light up through the night, that is progress with him. At present he is in a good mood and diving into the morning paper, especially the Funnies. His mood is " low-keyed " but, " High-keyed " in questions as his appointment nears with his Primary Care Physician. My stressor now is getting some financial intervention. Knowing what treatment involves and the help out there in the Cancer Community I do have a starting point. All that begins tomorrow morning before my appointment with my Primary Care, to see just where I stand health wise.

Have a Blessed Sunday!

Michele - Northern Kentucky


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8/10/14 1:45 A

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Hello on Sunday , I don't get in here daily but I am always happy to do so and read your mails first if all , I get a feeling of more calmness and acceptance today,. Also a few concerns re our own health, everyone tells us to look after ourselves but don't offer practical ways of us doing so,
My weight is creeping up I know and I hate that as I had reached my target once . It's hard to look after someone else and our selves. But that's all platitudes, we all know that .
We had a good day yesterday , our son Mike came to visit and we both enjoy his company . Maurice likes to listen mainly to Mike and I chat , he can't always keep up with the fast chat but. Include him in it too when I can.
Mike took us to a supermarket so I could stock up on fish as I can't buy fresh fish locally and
Maurice prefers fish to meat, it's easier to chew and swallow for him.
We also had a lovely lunch out which we enjoyed.
Then I collected a stitched picture that had been framed ,I am so pleased with it, I left another one to do .
Re smoking my mother was a heavy smoker . when she had dementia and dad was having mini strokes he chose for them to go in a care home. He hated it but knew he couldn't care for mother and he died soon after. The Home had a smoking room but staff said mum was not safe to smoke unattended so they removed her cigarettes. She could only smoke when someone sat with her, which was not often. I feel so sorry now she was deprived of her one pleasure in life. Yes it was bad for her yet she was 85 and had to die of something , it had damaged her lungs yes and killed her on the end, I dreaded visiting her as she clung to us begging for a cigarette crying and almost crawling to anyone who was smoking begging them to help her. When she was fitter we would wheel her outdoors and give let her smoke . But later she was bed bound most of the time . So she couldn't do what she needed so badly and died unhappy . It's of no help now to be told this story only basically the damage is already done in smokers , no one can force a dementia patient to do anything.
Hope everyone had a cal day . Irene

Edited by: STITCHINGNAN at: 8/10/2014 (01:46)
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8/9/14 11:05 P

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Laura, you commuted with nature and I commuted with Nature and God's four legged creatures.
Princess and Clover were entered in 6 events today mostly jumps with Dressage and they walked away with 6 more ribbons.

MY day was peaceful, no stress and a needed get away for the coming 2 weeks. From now on I have a feeling that once this chemo starts my time will be here at home until Robert is aware of at least some improvement with his Cancer. Robert did fine today by himself and he said he did sleep the biggest part of the day. He is now aware that his lack of energy is because of the Cancer. As with all Life...Time will tell! Michele

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8/9/14 6:39 P

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Oh my, more exercise today. After this morning's hike I went on a walk, checking out a Nature Preserve near here. It's wetlands, and we walk through on a boardwalk. It's beautiful and peaceful and soothing and a place I'll want to walk in some time in the future when I feel stressed and need to see something lovely and quiet and healing.

And then I mowed the grass. Two hours and thirty minutes today. Beat diabetes! Get back to daily exercise. And lose weight!

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8/9/14 12:16 P

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Good stuff today. It's a nice sunny day and not too hot, at least not yet. I have a friend whom I met here on Spark People, and we get together from time to time to hike. This morning she came for a visit/hike, and we went to a nearby trail and enjoyed lots of lovely trees and green things and wildflowers and the creek flowing through.

So that's today's effort to beat pre-diabetes. I absolutely MUST exercise every day. And I have to make the effort to lose weight. When I go back to the doctor in three months I want to see at least some progress and movement in the right direction.
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8/8/14 8:14 P

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With all that has been going on the last 2 months I have kept my A1c to an average of 5.3. It has taken me since last November to get it back in sync.... Robert starts Chemo the 20th of this month. He does like his Oncologist, that makes a big difference with him. He actually asked him questions and if he did not answer at times Robert asked him to put it in his terms. He told his son almost verbatim what he was told. Now, the question is ... will he remember tomorrow.

My oldest daughter and I will be heading up to Miamisburg, Ohio for another Hunter Class Event of Princess an Clover, will be back tomorrow night. His son will be available and pop in on Robert during the day!

Have a Blessed and Safe weekend! Michele

Edited by: MICHELE142 at: 8/8/2014 (20:16)
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8/8/14 4:53 P

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Y'know, Michele...maybe Robert may not get it about cutting down on smoking. Maybe he simply can't see the analogy from speeding tickets and accidents to his smoking and health problems. I know that Allan was never able to see the consequences of his actions. For him it's nothing new. He's never been able to see the connection between what he does and what happens to him.

So I'd say that what matters now is that you find a way to be at ease with yourself and not suffer when Robert says he's cutting down on smoking even as he's lighting up another one. We have to find a way to take care of ourselves.

I'm in trouble myself. I did finally get to the doctor today, and I'm not doing well. I've gained weight, and my A1c level is rising badly. I have one foot in pre-diabetes and the other on a banana peel. I did so well last year, beat pre-diabetes and lost weight and exercised. But now I'm falling apart. I see the doctor again in three months, and I do NOT want to be back up in pre-diabetes. Stress is deadly, but we know that already, that isn't news. I have to take diabetes and pre-diabetes seriously. I'm susceptible, I'm at risk for full-blown diabetes and it's up to me to put the brakes on, to lose the weight, and get that daily exercise, in spite of the stress and depression.
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8/8/14 7:22 A

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We all have said things in anger. But the key here is that we are only relieving ourselves of a certain amount of stress and adding more on us. Perhaps, years ago some of those things said may have registered in there minds and they may have attempted to change a few things. Now I hear the replied from Robert, " I've lived my life, the damage is done...why stop now. Okay, I get it however, he his doctors have said " If you haven't tried it don't knock It". He has been told that even cutting from a pack a day to 15 or 10, he will himself notice a change in his breathing. He doesn't understand that out of 80% - 100% of normal Lung Function he only has 47% total in both lungs. It really pisses me off when he says he's trying to cut back, then will light one up every 15 minutes for 3 - 4 times in 1 hour. He can not relate to himself writing a speeding ticket and getting a call in 10 minutes of a car wreck down the road involving the same car running through a Stop Sign. ..... Each day now brings a different set of challenges with Robert. Around here all the support groups are mainly at the main hospital 20 miles away.,20 to 25 minutes at tops on the interstate.

Hopefully, I can get some answers, tips or suggestions today. Michele



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8/7/14 10:23 P

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Irene, you told our dear Maurice that you were giving up on trying to help. And you say it was in some anger, but then you went out to see your friends and get to feeling better.

And Michele, you are having trouble getting Robert to quit smoking.

I struggle with giving up, too. Tomorrow I see the doctor for myself, it's MY appointment, not Allan's, and we're going to have a talk. I've already talked with whom I thought was the social worker, but no, he was the nurse, and someone else is the social worker, but never mind, the man I talked with understood that eventually there comes a time when we can't make our loved ones do anything. I cannot make Allan be compliant. I think the doctor understands that, too.

He's outside smoking cigarettes. I've given up. Let him smoke. Trying to stop him would only turn this house into a war zone.

I can't fix him! I can't fix the situation! I can't make up for his awful abusive childhood and his desperate life trying to escape from those abusive people, the conflicts with the mother who grabbed him by the neck and banged his head on the radiator and laughed at him when he cried, and yet he was so bound and attached to that abusive mother, he came back in spite of the hated abusive father who slammed him into the refrigerator and then kicked him with steel-toed boots. Crazy dreadful stuff here.

Crazy dreadful stuff and crazy dreadful memories, and I can't fix it. I'm not Wonder Woman. I can't fix it! I can't make Allan take care of himself.

I'm so tired.

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8/7/14 8:58 P

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emoticon ...did get to the Beauty Parlor this morning and stayed a bit to chat. Then headed for groceries for Robert, hopefully that will last till Monday or Tuesday. His tirade to day was everyone talking about his quieting smoking and way during the day I would go outside and walk so much. One his family wanted him to quit so he can be around longer and two, I go outside and walked so I don't have to see him end a life. I reminded him that the last doctor he saw, did not tell him to quit. He asked him to start cutting down with no time line. He also told him that when he could cut to 4 a day, it would be alot easier than 20 a day. to quiet.

Tomorrow he sees the Oncologist, since it is an early rise. So shortly it's bed-time for Me!
Have a great day tomorrow! Michele


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8/7/14 1:57 A

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Hi on Thursday, at times it does seem our lives are taken over by medical appointments. I think we need routine in our lives as much as the patients do,
Ican so relate to the word grumpy. Yes Maurice is sometimes but oh I can be especially if tired.
I realised yesterday I was gettng annoyed. M was not having a particularly bad day but would not accept help or advices , he would do things in his way or die in the attempt.
I told him I was giving up trying to help him . Of course I am not, it was said in anger, I told him later I know I am being grumpy so I and going out for an hour for a break . I met a friend in a small cafe we had a drink and a chat ,I felt better for it.
Hoping for a quiet calm day today ! Not a lot to want but it's not always possible. Irene

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8/6/14 9:43 P

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One more appointment to go and that's with the oncologist this Friday. Then hopeful I can get a schedule going so I can get back some balance around here.

Have a better day tomorrow! emoticon

Michele

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8/6/14 9:20 P

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I want the day to be over. It wasn't a bad day, but I'm done now. I found Allan sprawled across his bed, but that is becoming commonplace now. I will ask the doctor if there is a problem with this that needs attention. Sometimes I have no idea how to judge whether something needs attention or not.

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8/5/14 9:33 P

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Tonight is one of two early bedtimes for me. Two back to back appointments for Robert tomorrow. that makes me an early bird for tonight.

Have a Blessed day tomorrow and Be Safe! Michele

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8/5/14 9:24 P

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Awww, there are times when I feel grumpy and grouchy because I'm so stinkin' TIRED. I get tired, tired. I was seeing a therapist, and sometimes I'd just say softly, "I'm tired...." And the therapist understood.

Sometimes I'm just tired. My head is tired. Just more than I can deal with sometimes.

Today Allan dropped his glasses and stepped on them.

The lenses weren't broken, for which I'm grateful. But the frames and nose pieces were bent. Luckily this is a small town and the eye doctor's office isn't far. I took the glasses and the woman who does the frame fitting straightened them out. She told me there's a year warranty on those frames. Good to know, but it's not their fault if Allan drops them and steps on them. He breaks things. This is nothing new. He's careless, has always been, breaks things.

I take my books away from him if it's a book I don't want ruined. He seriously damages books. Covers torn off, spine broken, pages fallen out. This is nothing new. He never understood the concept of other people's things and the responsibility to take care when borrowing.

I'm tired...It's time for me to end the day and get some sleep.
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8/5/14 9:49 A

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Laura.. nothing untoward was taken by your post. Personally I try not to feel that way as that seems to be Robert's attitude for the past 25 years. Infact early on his grandchildren nick -named him " Grumpy " and it has stayed every since. Even with all he has gone through medically since 1998, he never lost his Grumpiness.

For the past ten years I have basically been alone around here. Occasionally, I'll even find myself talking to my self. Also, getting the right answers as well! LOL
Have a great day and Stay Safe! Michele

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8/5/14 7:46 A

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Hello, Irene...yes, there's the loss of conversation. Being around Allan is like being around a mildly retarded five-year-old. The conversation is just repetitive chitty-chat.

But wait! There are times when he's lucid! I was talking with the social worker over the phone yesterday, and he is well aware that people with early dementia can rally for a time and sound really good in certain circumstances. That's why it so often happens that someone outside the situation doesn't understand that something is wrong and doesn't believe us when we try to tell them that there's a problem.

Allan can rally at the doctor's office. He'll say he's fine, and engage in cheery but irrelevant banter that sounds good but conveys no necessary information. I believe there's stimulation that happens when he's in certain situations. And then he comes home and fizzles out.

I found it very supportive to talk with the social worker. He understands as well as we do what's going on. He understands that Allan is non-compliant and doesn't want to do the things he needs to do to take care of himself. And he doesn't blame me. I've been in other situations where I am blamed for anything that goes wrong or doesn't work out.

We see the neurologist at the end of next week. Finally, at long last, we'll hear the results of all that testing that was done back in the spring. Since the testing doctor didn't get back to us in a timely fashion I gather that Allan's condition isn't horrible or urgent. Or maybe he's in bad shape but because he's a charity case they aren't doing much...I don't know. I don't know.

I was talking with my daughter and was saying, You just don't know till you get there. We were talking about what to do if I get Alzheimer's like my Grandma. If Laura Johnson Junior ends up like Laura Johnson Senior. We can read books (and there are books now that didn't exist when Grandma was alive, and there was no internet, no support groups, no blogs or informative sites), but when things are actually happening it's a learning experience day after day.

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8/5/14 7:17 A

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Oh Michele! I didn't say *you* were grumpy! I said *I* was grumpy! I wasn't putting you down or criticizing you!

Yes, here is where we can vent, because we understand these things.

I'm glad to hear that despite the bad news about Robert's condition you are still able to get out for some things, like the beauty parlor and your visit to Ohio. These things are so important. I have my book club today as long as nothing goes wrong.
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8/5/14 2:05 A

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Hi friends on Tuesday morning. That is one full week you have Michelle. Take it one day at a time,I am glad you can fit in one day for yourself.
I am ok . It can be lonely as you all know. I thought yesterday I haven't spoken to anyone only Maurice for 3 days then it's not real chat now. So I went to craft group in the afternoon. M is fine by himself on day time with tv on.for company. I had a good chatty time at craft group and felt better for it. Friends are so important now especially ones who understand a little of what a lonely life it can be . I relax at home with my sewing as M can look after himself generally in showering shaving dressing toilet needs ,feeding himself , all the basics but he's not the intelligent person he used to be. So stubborn though not always for the right things . I am sure you all know that , have a good day. Irene

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8/4/14 10:11 P

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Nope not grumpy, just venting. We all need that chance and who best would understand....Us!

Biopsy reports are back and Robert has squamous cell carcinoma. Now all those test an reports will be sent to the Oncologist for Fridays appointment. tomorrow is errand day, then Wednesday he has his Pulmonary Function Test followed by his appointment with the Pulmonologist. Thursday is my day at the beauty parlor and Friday is his appointment with the Oncologist. Saturday, if everything is alright with Robert I'll be heading up to Miamisburg, Ohio with my oldest for the day for another competition with my Granddaughter.Sunday is my day of rest for the coming week.

Hope this week is fruitful for everyone! Be Safe! Michele

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8/4/14 9:26 P

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Whipped into Zombieville, huh? I can identify.

Today went pear shaped. It started with he sitting with the phone waiting for a call that was supposed to come at 8:30. The phone didn't ring, so I thought, Okay, maybe the social worker will call at 9. No call. By 9:15 I was ready to go out the door and get moving, and the phone rang just in time. Had I left, Allan would have answered the phone. My best friend calls him "The Non-Answering Machine" because three times out of four he won't be able to relay a message.

The phone call came before I went out the door, and I was on the phone for at least half an hour or maybe 45 minutes. It was too late to get to Jazzercise, and not enough time to go to Curves before taking Allan to the Wound Clinic.

I didn't get the kitchen cleaned up after all. It's still a mess. I'm disappointed. I wanted to get the mess cleaned up. I'm totally burned out on trying to cook without sodium. I don't know how long I can go without having a meltdown myself. I hate being handicapped. Worse yet, I hate having a handicap that doesn't show. If I were on crutches people would know I have a disability. But ADD/ADHD doesn't show, and nobody can understand why I am so totally unable to do things.

Grumping again. Time for bed.
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8/3/14 11:20 P

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Today I believe I have whipped myself into zombieville. My pillow is calling and I am answering.
Nightie, night! emoticon

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8/3/14 9:34 P

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Although I'm struggling with depression today it was still a good enough day. I had lunch with my friend, and we then went to the little Art Museum. Still I'm feeling very tired and burned out. It was good to see the Art Museum, but it reminded me of what I'm NOT doing. I can't force creativity. Tomorrow morning a new week starts, and I'll be off and running with a phone call appointment first thing in the morning, and then it's to the Wound Clinic. Now I just want the day to end.
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8/2/14 5:04 P

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An unusually quiet day around here, not one question asked to this point. Know he's doing some thinking as you can see those wheels turning and tuning. For a change he seems to be at peace with himself.

Blessings to ALL! Michele

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8/2/14 2:04 A

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Good you can read the mails anyway even without joining I think . I have picked up on a lot of things I didn't know,
Ŷes .Maurice was 85 yesterday a quiet day really. The family say they will celebrate later, there's an imminent birth, illness and some are away . So a birthday celebration is not possible yet. Two sons called him last night, he was ok talking to one. But by the time our eldest son rang M found it hard to chat to him . He forgot words, names and got all confused. He willingly let me take over , I was glad in a way Phil our son realised what his dad is like at times, they shut things out of their minds at times I am sure. So a quiet weekend is what Maurice needs now. Hope you all have a calm weekend we don't crave excitement now just peace and calm, Irene

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8/1/14 9:00 P

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Oh, and I found the Talking Point forum. This is the UK site, but apparently I can get into it. I don't know if I registered with the Alzheimer's Association yet. But thanks, I found it.

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8/1/14 8:58 P

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Hello, Irene...Now it's still "today" here to the west of you on the other side of the Pond. By now it's "yesterday" in England, or is it "today" in England and "tomorrow" here in the Colonies? In any event it's still Maurice's birthday here, but for you it was Maurice's birthday yesterday...all this instantaneous Internet communication sure is different from when I was young back in the 1940's.

In any event I hope Maurice had a happy birthday and that there will be a nice time on the weekend with your son and his family.
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8/1/14 4:36 P

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My husband's stroke was from his not taking his blood pressure meds. He still thinks "why me?" It is obvious to me and the doctors.

chris

GOAL: Reduce A1C,BP,tryglicerides,and weight. HOW? By not eating added sugar, using Omega3s, base meals on veggies, water aerobics at least 3X week and using NuStep when I can't get to the pool.

CAREGIVER HELP SEE THE LINK PLEASE www.agingcare.com/

30 lbs. gone. Now to work on the next 10 lbs.


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8/1/14 10:38 A

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The issue this morning, has been his not remembering nothing after his Bronchoscopy yesterday. Especially who was there! To him he had no procedure yesterday, as today is the day and why am I not ready to take him to the hospital. I keep telling myself I'm going to invest in a tape recorder. So he can reply the answers all day long. In a fashion he is putting his faith in his PC and God's hand. What he is lacking is that he must help them in order for them to help him.

Basically, I'm heading into another dimension Michele!

Michele - Northern Kentucky


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8/1/14 1:53 A

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Sorry About the diagnosis
I think you partly expected that, it's you that bears most of worry and stress of course. But with physical issues there is more help than with mental ones.
Its Maurice's birthday today he is 85 , he knows what day it is. I told him I have no special celebration planned . Maybe at weekend our son 's family will have something going on, I said let's celebrate the fact we are both still here!
The site in use on line is called Talking Point and I have an Ap for it but it maybe a UK site ,in think it's run by A society . There are really good topics on and sometimes embarrassing subjects that are kept under covers usually. What I like is there are patients on the site who sound intelligent and able to communicate still, to see things from their side is eye opening .
Have a good weekend everyone , Irene

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7/31/14 9:33 P

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Biopsies were done today and the preliminary report shows cancerous tumors. Now all there is to do is to wait for the Final report and results. As for me, I just have to sit an watch him drive another nail in the coffin. He is so in Denial and believes this Bronchoscopy was done yesterday and does not know why we had to go back to the hospital again today. His oldest son, my oldest daughter and I talked to the Doc. afterwards and was informed that he went down to the regular recovery room as after the tissue was taken on the largest tumor - there was some bleeding and they had stopped the bleeding but wanted him watched until he was awake an alert (?).

I certainly hope you all had a much better day than I had.
Have a Blessed day tomorrow!



Michele - Northern Kentucky


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7/31/14 8:59 P

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Today was Doctor Day. Nothing much to report. Same ol' stuff. I told the doctor how I'd lost my own appointment and couldn't get anything till seven weeks from now. He went into his computer and got me in a week from tomorrow. I get that he has some power over scheduling when there's a need for him to see someone.

Michele, I don't know that it's a bad thing to hide Robert's cigarettes. I had to hide the salt from Allan. And I have to be the No-No-Nanny.
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7/30/14 10:24 P

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I am learning so much from you ladies. You are amazing . I know there are major frustrations and loss of patience and even anger. But I am very impressed. chris

GOAL: Reduce A1C,BP,tryglicerides,and weight. HOW? By not eating added sugar, using Omega3s, base meals on veggies, water aerobics at least 3X week and using NuStep when I can't get to the pool.

CAREGIVER HELP SEE THE LINK PLEASE www.agingcare.com/

30 lbs. gone. Now to work on the next 10 lbs.


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7/30/14 9:46 P

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Evening, all went well this morning. Robert is cleared for his Bronchoscopy tomorrow morning.
I did a bad thing an took the 4 packs of cigs. he had left and hide them until after tomorrow. Once he is home and if he is having no discomfort with his throat, a half of that pack he can try.
Once we have an idea of just how they treat, he can make that full discussion on quitting. Right now I have a very scared puppy to deal with through the night with an early rising time. See you all tomorrow evening.

Have a Blessed Day on the Morrow. Michele

Michele - Northern Kentucky


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7/30/14 8:56 P

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Hello, Irene...what is this online A site? I'd like to read the things there.

I can understand that it's really hard for a person with A struggling to get a word. I can identify. I've been having nominal aphasia for some time, and it's so frustrating to know what something is or who someone is, but not be able to access the name. And having ADD/ADHD makes me really tired, struggling to make this defective nervous system work.

I can identify when you said you felt guilt for telling Maurice that it's his fault he doesn't wear his hearing aid. There have been times I've been irritated with Allan, but he'd done something he couldn't really help.

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7/30/14 8:50 P

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Hello, Michele...perhaps indeed some age discrimination, but I suspect also discrimination against poor people. It seems to me that poor people have to learn how to be very clever to get needs met.

On the one hand it sometimes seems to me that Allan gets short shrift as a poor person. OTOH, he has also had some stupendously expensive treatments and operations. If we were married I'd have to pay out of my own pocket, and I'd now be seriously bankrupt. If I had to pay for him, I'd have lost my home, my income, all my resources and I'd be in a poor people's furnished room or even homeless.

Health care is really dodgy. Sometimes you're lucky, other times you aren't. People in the middle are stuck. Rich people get what they want and need. Poor people on Medicaid can get things that I could not possibly afford. It's the people in the middle who get stuck, it seems to me.

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7/30/14 12:47 P

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Later, M was passed ok at general medical, but has a fasting blood test tomorrow for cholesterol . The doctor was so good with him and explained what A is and how it affects the short term memory first and what may happen. He didn't seem worried these things don't affect him!
I sometimes look in at an online A site where both patients and carers write also medical people , there were two topics today which struck a chord with me. One re sleeping a lot which M does. A patient explained it's hard work having A, sometimes looking for a word in his mind is like searching a vast filing system where many drawers are locked and others all out of order,. So everything is hard work hence patients can sleep a lot .
Other was re deafness , A can cause it to some degree, or patients chose to be deaf if they can't take something in their heads. Or as in our case they have hearing aids but won't use them ,they may have forgotten how to adjust them or how to put them on even.
Both topics I could relate to and made me feel guilty for telling M it's his own fault he doesn't hear things as he won't wear his aids,
I am taking all this in and hoping it helped me understand something of life from the patients aspect . Bye Irene

Irene in Nottinghamshire UK
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7/30/14 1:28 A

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Frustration and annoyance come to mind reading latest mail.
Maurice has a physical medical check this morning, I go in with him of course,.
Back soon, Irene

Irene in Nottinghamshire UK
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7/29/14 9:33 P

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HealthCare reform, great isn't it!
I sometimes feel that there is an age discrimination going on.


Edited by: MICHELE142 at: 7/29/2014 (21:35)
Michele - Northern Kentucky


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7/29/14 9:24 P

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This day went pear-shaped. First I gave that dirty old man his third shower of the year. Wow, bathed three times in a year! I challenge anyone to give that man a shower if he doesn't want it! Then I took my clean old man to the cardiologist.

Whoever did the scheduling was an idiot. We were supposed to see the cardiologist yesterday, but the idiot who scheduled the pre-op testing went ahead (without asking me) and moved the cardiology appointment to 11 today, just ahead of the 11:30 pre-op appointment.

No way we could be on time! We were supposed to be at the pre-op appointment fifteen minutes earlier, which left us just 15 minutes for the cardiologist.

And of course it took much longer at the cardiologist.

And there was no pre-op appointment after all. The cardiologist checked on what was supposed to be done and said NO. There's no way Allan can have this procedure! Far too dangerous with Allan's bad health. He cancelled the pre-op appointment and the procedure. The other doctor is out of town today. So I don't know what we're supposed to do next. I don't know if we're supposed to go back to see the doctor who was going to do the procedure or not.

So no pre-op appointment. Had I known what was going to happen I could have kept my own appointment, but my crystal ball doesn't work. Whoops! Back to square one.

Now I'm tired and I want to end this day.
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