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12/9/13 2:31 P

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You know you're a caregiver when.....

taking your own shower feels like a guilty pleasure!



Susan-- in Metro Detroit, Michigan

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12/8/13 6:24 P

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Thanks for responding!

It ain't gonna happen. The social worker told me that ol' Sweetie simply isn't gonna be put in Health South for a month. And besides, even if there were a physical rehabilitative program he could be in, what would happen once it was over? He'd go right back to business as usual, which is to prefer to lie around watching TV. I am NOT going to nag and scold a guy who simply is NOT good at cooperating with caregivers.

Phooey! There's help available for free at the Senior Center. They have a treadmill, and they offer exercise classes. There's one on balance, and they have senior strength training available. I would gladly take ol' Sweetie over there, but I need a crowbar to pry that man away from his TV.

We go to the doctor. That's what we do. We go to the doctor. Sweetie is not bedridden, he's capable of walking. Now, he's allowed himself to atrophy by not using his muscles. I know his legs hurt. But it's kind of like things get worse because he doesn't make the effort to slowly strengthen his legs.

I feel ashamed. There are people here who are having a much, much harder time than I am. There are people here who would gladly trade their situation for mine. I am not trapped in the house or shackled to someone who is so senile that I have to watch him constantly. Nor is he mean and abusive. On the contrary he's stupendously sweet and loving, far far moreso than when he was younger and had his brain intact. He's changed for the better, rather than the worse as far as his disposition is concerned.

I'm thinking that much of my distress is over my own handicap which makes it hard for me to function and do things that are necessary. I struggle daily with ADD/ADHD and have not found a viable solution or treatment that helps. I have depression. If I could find some relief from the depression and ADD/ADHD I might be able to deal with the caregiving problems better.

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MYTURNNOW2013's Photo MYTURNNOW2013 SparkPoints: (34,411)
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12/8/13 5:50 P

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I hear you! For awhile during the 17 months he was away (hospital and rehab) I would say I knew God wouldn't give me more than I could handle without his help, but I sure wished some days HE didn't TRUST me so much!

The Rehab Center, once they moved him to the long term care floor, was a very depressing place, definitely the feel of a nursing home. I was "adopted" by several of the permanent residents who were so lonely from no family to visit them.

I was working 50-60 hours a week, visiting him another 30 and then when you throw in trying to sleep, needless to say the house was a disaster!

I hope you get the help you need for Sweetie soon. The Health South option would not only get him some rehab, but also give you a much needed break.



Susan-- in Metro Detroit, Michigan

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12/8/13 11:50 A

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I'm not yet where you're at, but I'm listening and learning. Bit by bit we're having to get things in place for Sweetie.

I'm discouraged by the "help" that is available at this time. It's not the help I really need.

We had a nurse in here at one point because Sweetie had a wound vac. I had to teach the nurse how it was done. It bothers me that the professional nurse didn't know what to do, and that I, who am nobody, had to take responsibility for teaching her.

I can't predict what will happen in the future. I don't know what I will be able to do. It seems that as needs arise I learn to cope.

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12/8/13 9:30 A

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I retired early to be caregiver to my dear husband of 39 years. Prior to retirement, I worked with our area agency on aging to get his wheelchair ramp built and they set him up with, at first, a home health aide 2 hours a day 4 days a week, and eventually it will be 2 days a week. He will have PT and OT coming to the house for the next month as well.


As long as he has Medicaid, he will qualify for the health aide and I'm told as long as he has the health aide he'll qualify for Medicaid. Seems like a circular relationship to me.

The first HHA they sent was allergic to cats, and we have two of them! The next day they sent someone that works in the office and didn't know how to shave him. I taught her how. The third one also didn't know how to shave him. I explained to her privately the procedure and said " If you show confidence, he'll never know this is your first time shaving a man. Just remember downward strokes, not upward and take your time." It went very smoothly.

Now that he's had a chance to get comfortable with HHA #3, I can leave the house, even if only for an hour and a half a few days a week for a brief respite.

It's now been two weeks since he came home and I'm learning as we go:

-laundry is now a daily occurrence
-as soon as you clean the bathroom it will dirty again. Bleach wipes are my new best friend.
-learn to sleep when he sleeps, or you will never get any
-when he lashes out in anger (verbally), give yourself a time out, walk into the bathroom, shut the door and BREATHE, in a few minutes he'll be back to his sweet self, usually. It's generally the dementia or his blood sugar out of whack causing the crankies


I am enjoying what is left of his years on Earth with him, and reminding myself that he would not have survived in the nursing home environment where he was depressed for another six years prior to my "normal" retirement.

All in all, I think I'm blessed with a decent support system.


Susan-- in Metro Detroit, Michigan

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11/6/13 8:49 A

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Hello, Michele...I've already done those things. When he was last in the hospital the diabetes educator came around and signed us up for a two session education class. I went to the first class two days ago. I did not bring Allan along because there's no way he can sit there for four hours. I'd have to leave the class and take him home, which would mean I miss most of the class. This coming Monday is the second class which is about diet.

It's not that I don't know what to do. It's that I can't do it. My own disability makes it very hard for me to do all the things I need to do. I need help, and the "help" that is available isn't helpful.

There's no point in my asking Sweetie that if I am unable to care for him, who will? All that will do is frighten him. He has no solution. He doesn't know what to do. As often as not he doesn't even know what day it is, or where we are going, or which doctor we are going to see.

In the end I'm on my own and help is very limited. This is my problem and it is up to me to do the bulk of what needs doing. If I'm handicapped, that's tough, I'm still held responsible for getting everything done.

Today we have an appointment at the Wound Clinic. I don't know what is going to happen. I have to be willing to let go of the things I wanted to do. I don't like it, but that's the situation.

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11/5/13 11:13 P

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Get his doctor to give you a referral for a Diabetes Educator. Then you yourself start restricting sugar and high carb foods. Add more fruits and veggies to his diet and rid the cupboards of snacks that are high in carbs and sugar ( protein is what he needs for snacking). Some diabetics count calories and some count carbs. only ( me I count carbs).
When you ask for the referral ask if he can give you either the amount of calories per day or the amount of carbs per meal an snack. Restricting sugar might be your first step and one you can start on your own. By sticking to his Diabetic Diet you will find that your health will improve as well. Start with this first and go from there.

One question you can ask your DH more than once is " If I get down, who will take care of You, let alone me?" The more you ask it, the more they start to think!

Michele - Northern Kentucky


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11/5/13 5:35 P

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I went to the Office of the Aging this afternoon. Useless! Useless! Useless! I'm so discouraged! They can have someone come and give Sweetie a bath. They can arrange for lunch to be brought 5 days a week. They can help. Help? How can you help? Well, uh, we assist. What does that mean? Assist how? I don't know, uh, do some things around the house...

He falls. Blank stare. He fell into the bathtub again. Oh, that's too bad. He really needs to be put in Health South for a couple of months for rehabilitation. Oh, we have nothing to do with that.

Worthless! Now I feel tired. I'm done for the day.

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11/5/13 8:07 A

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Oh my...all this is so convoluted! I'm learning as I go. What I really want is for ol' Sweetie to be put in Health South for at least a month. No, I don't think it's nursing home time yet. But it is definitely rehabilitation time.

I'd wish they would put him on a proper diet, low sodium, carb controlled, and weight loss, and no way to sneak into the kitchen and raid the refrigerator. I'd wish they would pay attention to diabetes and sodium-induced edema. I'd wish they would not allow him to lie there in bed all day waking and snoozing and waking and snoozing and watching TV. I'd wish that if he were awake during the day he might sleep a little more at night. Right now day and night are the same for him.

I'd wish they would get him doing the appropriate kinds of exercise. I'd wish they would do cognitive stimulation. While I certainly do not expect him to be all cured, I do think he could do better.

I'd wish that they would arrange for follow-up after discharge so that he doesn't simply default back into old bad habits. I'd wish they could hold him accountable somehow to be more active and not make it so doggoned hard for me to care for him.

I'd wish that I could get help as his caregiver. I feel abandoned to a great extent. This man is more than I can carry. I need support as a caregiver, and I don't mean just a monthly support group meeting. I need to be able to manage diabetes testing, to provide the correct meals, to take him out to go mall walking - a lot is needed here, and I'm falling down under the load.

I'm intending to go to the Office of the Aging today and ask for that help I was supposed to get.

My great fear is of being accused of Elder Neglect and even Elder Abuse. I don't abuse this man, I treat him like a king. And as for neglect, I'm struggling to care for him, but he simply does not cooperate, and he's too much to manage. I need help.

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MICHELE142's Photo MICHELE142 SparkPoints: (96,533)
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11/4/13 9:49 P

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Hubby's Home Health was arranged prior to his discharge but for only 2 to four weeks. After they once leave it is harder to get that coverage and help back in the home. From what I've learned help comes quicker if done when people are in the hospital. However, the length of time in the home and the hospital depends on the Insurance Companies. Keeping them out of the home.....someone with a POA needs to say ...Bye! That said, when you may need them again it maybe harder to get them back.

Michele - Northern Kentucky


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11/4/13 6:53 P

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Is there any way to get them out earlier? They're making things really miserable for you and your family, and once again, I wonder if caregivers are obliged to endure abuse and impossible situations. Just how much do caregivers have to suffer before helping agencies step in and give the caregivers some relief?

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11/4/13 1:54 P

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The question I'm asking myself is - is this worth my self esteem?

Michele - Northern Kentucky


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11/4/13 11:26 A

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The ladies will be moving into a nursing home within the 6 month period. That is, if I last that long. I think once Medicaid is in place, we will be moving them. They are causing a great deal of grief and division within our entire family.

Hope your days is the best ever!

"Excellence can be attained if you:
Care more than others think is wise,
Risk more than others think is safe,
Dream more than others think is practical,
Expect more than others think is possible."



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11/4/13 11:14 A

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Becky, it doesn't sound to me as if you are guilty of "whining". It sounds to me as if you're in a pretty terrible situation, stuck as a caregiver to abusive old women, and you need to vent and cry. Why wouldn't you cry? You're being abused and there isn't much you can do about it. You're stuck for six months, and it sounds as if there really is no way to reason with these nasty old harridans.

When the six months are over I hope you will move them out and into a nursing home. Okay, maybe a nursing home isn't great, but these unpleasant old women aren't making it easier for you to have them in your home.

Are caregivers obligated to ruin themselves, exhaust themselves, destroy themselves, wear themselves out till they drop? Are we caregivers worth nothing? This is a question I am asking myself over and over these days.

I have to run now. The day isn't going to go the way I intended, but that's often the case.
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11/4/13 8:12 A

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The weekend was very difficult. MIL was especially mean to me.

As for taking them out of assisted living, we had no choice. The ladies ran out of money and we couldn't get Medicare started until they were in our home. I'm so upset, I can't stop crying. I left my phone at home so it couldn't be traced and I'm not going home until after my class tonight.

Things are not good. I guess I should stop whining and get to work. I hope all of you have a wonderful day. Remember to do something nice for yourself.

Becky

"Excellence can be attained if you:
Care more than others think is wise,
Risk more than others think is safe,
Dream more than others think is practical,
Expect more than others think is possible."



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11/4/13 5:24 A

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Well, wow! It sounds like you have a much better medical system where you are than we do here. There's no e-mail at this medical center, and if I call I have to play telephone tag (after sitting and waiting on hold) and if I'm lucky the nurse might return a call maybe. I'm very frustrated because time's a-wastin' and Allan is getting worse and I feel as if we have to have a bad emergency, like his broken wrist, before anything gets done.

There is a medical system in this area that does use e-mail, but we had difficulties with them that made it impossible to go there.

Well, today is Monday. There is the first four-hour part of a two part diabetes education program that I am going to go to. I'm only the caregiver, and Allan is supposed to be the primary person there to learn. But there's no way I'm taking him. He can't sit there for four hours. He'll last one hour at most, and then he'll want to go home. And he really will need to go home because there will be problems that make it impossible for him to sit there all afternoon.

I'm trying to take care of myself through this. I'm going to go to Jazzercise and get that cardio exercise. Then I'm going to go to the Office of the Aging and get busy trying to get help.

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11/3/13 9:47 P

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Ditto here!

My cell phone is either on 24 or I keep it off and check if every two hours. My girls will either text me or message me through Facebook. All doctors have my cell phone or we keep in contact through their e-mail system. That system is great and also saves calling the office or running up there with written messages for them. I can let the doctor know what is going on, send his blood pressures, and oxygen sats, requests for yearly renewals for his medicines or for what every I need and have an answer either before noon or dinner that day depending when sent. That web site does work.

Michele - Northern Kentucky


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11/3/13 7:49 A

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Oh wow, Michele...same here! So your hubby told them he could do it all, but nobody checked to see if this was really so...?

Sounds like my ol' Sweetie. The doctor will ask, "How are you doing?" And Sweetie will say that he's fine, no problems.

Baloney! His legs are seeping fluid, he's fallen again, his sleep apnea is awful, this thing and that thing - he's in need of treatment and help. But to listen to him there's nothing the doctor needs to do.

And if he does admit to a problem he usually gets most of it wrong. He can't tell the story accurately.

We have a problem when somebody calls while I am out. He rarely relays the message to me at all accurately, and if he does tell me there was a call, he can't remember who it was or what the call was about.

The caller ID does keep a call log which I check to see if someone has called. Problem is, so many of the doctors' offices around here use some kind of weird phone system that gives a notice "out of area" and no number so that I cannot know who called and call back. Or Sweetie will pick the phone up so fast it doesn't have time to identify the caller.

He did that the other day. He answered the phone, listened and then hung up. I asked who it was, and he said, "I don't know." I'd heard him pick the phone up too fast. There was no identification. I have no idea who called.

I tell people, please, please, if you get Sweetie please understand that maybe I'll get the message, but far more likely I won't. Even if it's about him or for him, he seldom remembers, and if you want information to be retained, please talk with me directly.

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11/3/13 12:00 A

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Back in the 80's, within this tri-state area, the license boards of all health facilities and the Joint Commission for Accreditation ripped the facilities a new one. Just about all those visited by the Joint Commission for Accreditation watched them for a good five years. Patients were sent home with infections, open wounds and bed sores, unable to care for themselves i.e. fix meals change dressings, walk or even call for help. Policies were changed to address all this, however with hubbies last 2 surgeries and fractures, to me things have not changed. So when that Surrey came from the hospital, I filled it out not hubby. Seems hubby told them he could do it all, but no one checked him off or watched to see if he could. He just wanted to come home so I could do what he did not want to do.

Michele - Northern Kentucky


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11/2/13 4:14 P

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There's so much to learn about caregiving and problems that can arise with nursing homes and facilities. Sometimes a facility will try to bamboozle the caregiver into taking the person back even though it's more than the caregiver can handle and even though the caregiver isn't legally obligated.

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11/2/13 12:25 A

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What brought the promise of caring for them for 6 months? It seems you and your DH walked into a trap. When you made this discussion did the facility where they were staying work with you for assistance or did they just have you sign on the dotted line.

The majority of hospitals have Elder Care Associations either hospital based or access to one. Along with Elder Care there should also be a Support Group for Caregivers. That way some people would have a better idea of just what a Caregiver needs to do and what they may have to give up to provide care.

In my case, I knew the pros and cons going in. This time, it has not helped.

Take a deep breath and draw up a new plan that you and hubby can agree on and handle.

Better yet, talk to your doctor and some professional as to whether this is right for you and your family. Be Safe!

Michele - Northern Kentucky


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11/1/13 8:35 P

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Oh my gosh, Becky...first you comforted me, and now I want to comfort you! Here I was complaining about taking care of ol' Sweetie, and here you are with two mean and hateful women!

You say you promised six months. Can they go to a nursing home after that? Are you stuck for the indefinite future? If you simply can't do it any more, you simply can't.

Why did you take them out of assisted living? Was it not enough assistance for them, was it assistance but not enough care for people whose dementia was advancing?

Now I can empathize with you crying and being depressed! No wonder. And I don't think you're terrible at all for thinking it would sure help the situation if they would die in the near future. I'll bet my bottom dollar that many, many burned-out caregivers have that same thought. I sure hope I outlive ol' Sweetie. Although I love him, the fact is that I need to have a life, and I don't want to die in harness. I don't want to think that I'll never have a chance again to do something for myself, that my own life is over and all that is left is caregiving.
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11/1/13 11:10 A

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I'm checking in. . . Times have been very tough and my health is suffering. MIL and her sister are not being nice. . .to ANYONE including each other. MIL started with Vascular Dementia and her sister has Dementia but it's not vascular. Both are eating us out of house and home. Before we took them out of assisted living, they only picked at their food. Now, since being in our home, they eat full plates plus dessert and want more.

I have gained 12 pounds and feel like I have a ring around my waist. Hubby has put weight on as well. As for support, our kids "babysit" twice a week for two hours. It's the only time hubby and I have together without the ladies. They are so mean and hateful. When MIL has her mind, very briefly at times, she always asks, "Why are you doing this because I've never been nice to you?" Yea, after more than 33 years of marriage to her son, she has never been nice to me. Why? Who knows.

As for support. . .the Area on Aging is helping us with the Medicaid process. They sent us a bill because MIL makes a little too much money and we need to have a caregiver during the day while we work. She gets a VA death benefit since her husband retired from the military. Here's the kicker. . .we have to pay the Area on Aging Passport program the money but the VA may want their money back because we took her out of the assisted living facility. The Area on Aging said they will NOT refund any overpayment and we would have to pay back the VA out of pocket. . . WHAT? Yea, I get it. The poor get poorer and the rich keep taking.

Medicaid has us jumping through hoops asking for this document and that. We have responded quickly and with exactly what they were asking for. We kept excellent records.

I'm tired, I'm getting depressed, and I cry often. I just don't want my husband to see me cry becuase he'll send them to a nursing home. I don't think I can handle that since I know what kind of care they would get. I promised 6 months and I will keep that promise. Both ladies are in poor health. I know I sound like a terrible person, but I hope they pass before then.

I understand there is help out there but I haven't got much time for myself and what little time I do have, I'd like to spend with my husband.

May you have a peaceful day. Be well and try to find a moment for yourself.

Becky



"Excellence can be attained if you:
Care more than others think is wise,
Risk more than others think is safe,
Dream more than others think is practical,
Expect more than others think is possible."



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10/5/13 7:20 P

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When asking questions, I tend to remember asking "Why" to answers or instructions given by parents. Remember the many times my children used the word "Why" when they were growing. Realized, though that I and they used that word continuously until the answer made sense to them and myself. I don't ask "Why" anymore I continually ask "and where do you supposed this help is" until I get the answer that satisfies or helps me!

After all the squeakier the wheel the quicker the assistance!

Michele - Northern Kentucky


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10/5/13 12:47 P

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Hello, Michelle...yes, ask what sort of help and from where. I've asked this question a number of times. It seems to me that this is a standard thing they say. Dear Abby and Ann Landers would write that in their columns. Have a problem? Get help. Get counseling. Anybody I'd turn to would parrot those statements. Get help.

And wearily I'd ask, for the umpteenth time, What help? What help is available to me? What counseling? Counseled by whom?

Today is a better day. I worked out at Curves and had a 5K walk. Now I'll have my daily nap, and then try to get some things done.

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10/4/13 8:31 P

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An if the groups tells you to get help you reply. How and from where.

Michele - Northern Kentucky


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10/4/13 7:30 P

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Today I'm feeling crushed, just crushed. The depression is heavy, the ADD makes it hard to cope with things, and I only want this day to be over.

I thought of calling the Alzheimer's hotline, but what would I say? That I'm depressed and burned out? And what will they tell me other than, "get help", or "go into therapy", both of which I was already told the other night by the Alzheimer's representative, and both of which I have done repeatedly to no avail?

Soon I will go upstairs and end this day. I've had enough. Tomorrow may be better. I have bad days and fairly decent days.

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The best part is that there is someone to listen. Talking about a situation to someone aware of what is going on and can go on with Alzheimer's is the best way to get through those progressing problems. From the early stages to the end stages. Right now we are dealing with the early stages of Dementia, knowing Alzheimer's is down the road in the future with us.

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10/3/13 8:31 P

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It was a good presentation by the Alzheimer's Association. The presenter talked about behaviors that can happen, and how to respond. I also got the phone number of a 24 hour helpline that I can call if I'm feeling overwhelmed. I don't know that there's much anyone can do, but they are there to listen and give support.

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10/2/13 3:04 P

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Let me how that goes. Be Strong, Positive and stay Safe.

Michele - Northern Kentucky


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10/2/13 12:44 P

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Thanks, Michelle, for the suggestion. At this point we have no idea if it's Alzheimers or not. The neurologist had said it was Vascular Dementia, but now he has forgotten that he gave the diagnosis.

Tonight there's a seminar for caregivers at one of the senior residences. Every fall they give four seminars, one each Wednesday, and this week it's about why senile people behave the way they do. And I hope also how a caregiver can respond in a positive fashion.

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10/2/13 11:37 A

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And this is one reason for Caregiving being so frustrating. At least you have the cardiologist looking for answers.

Have you looked into the Alzheimer's Association? Like the M.S. Association, the AA has loads of information including avenues of assistance. Try giving them a try.

Edited by: MICHELE142 at: 10/2/2013 (11:37)
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10/2/13 7:59 A

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Hi, Michelle...the primary doctor isn't saying much of anything about it. The cardiologists have been trying to find things out, but the primary doctor isn't doing a lot.

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10/1/13 9:40 P

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What has his Primary Doctor said concerning this problem?

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10/1/13 8:39 P

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I don't know if my Sweetie has early Alzheimers or not. The neurologist is USELESS, and I'm angry about that. He said there was vascular dementia, but the last time we were there he'd forgotten about a test he'd ordered, and he'd forgotten about the diagnosis he gave. I have no confidence in this doctor.

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You are so right, when you care you can not and should not sit back an do nothing. As for Reagan, his diagnosis was Alzheimer's, which the medical world is saying...starts with dementia. Which is what the docs. were saying hubby had because his Mother was diagnosed with Alzheimer's. But since we found out it was caused from hypoxia 2nd to anemia, he is much clearer now mentally. However, that's not to say his blood work will not drop once again.

Caregivers... Care, that is one reason we put our own wants and needs aside for those we care about. In my case, our marriage has become stronger over the last ten years. Yet, at the same time I do not have any idea what will happen further on in time. Frequently, I will also quote " Live, Laugh and Love, which is the name of a song my daughter wrote an recorded for Christen Music. Yes, I'm laughing more, cause I'm tired of crying. And when I can make hubby laugh, I know he understands what I'm saying an doing.

My Faith will get me through this, and I feel that He is watching! Michele

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9/30/13 8:23 P

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Well...uh...I don't know how to respond quite...yes, I'm very generous with my Sweetie, I do care deeply, and I do love him generously and I speak to him kindly. These are lovely words and I appreciate your kind heart that sent this to us. You are a good and loving person.

But it's not enough, and I can't just leave the rest.

I'm empathizing with the other people who posted, TBWELL. Serious senility is exhausting to the caregivers! My grandmother went senile, and you couldn't leave her for even a minute! Trying to take a bathroom break was a major task. There's Grandma trotting down the street!

You can put a little kid in the playpen. But you can't put Grandpa in the playpen!

So far my Sweetie is in the very early stages of senility. But I am going to go and find out what is involved in putting him in a home.

No, it's not time yet. But I don't want to do nothing, and then eventually he's too hard for me to keep at home and then I find out that there's a waiting list, or some other hurdle I have to go over.

As for Reagan, he went senile. But because of who he was I suspect there was no problem in getting caregivers to do the work of taking care of him. Not a big deal for his family. But for those of us who care for people who were not presidents, and have to jump through hoops to get help it's another matter.

I hope TBWELL is reading and will check back in.

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9/30/13 6:15 P

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Lately, I have hung onto this quote of former President Ronald Reagan, which is: " Live simply, Love generously, Care deeply, Speak kindly, Leave the rest to God ".


Michele - Northern Kentucky


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9/30/13 5:22 P

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Yes, yes, TBWELL! I can identify. I'm putting my needs on hold, putting my needs on the back burner, postponing my needs because my Sweetie needs needs needs so much! We absolutely live at the doctor's office and hospital.

I'm pretty badly depressed behind it. I do know that if I collapse I won't be any good to either of us. So I make an effort to get exercise to keep my health up. So far I'm succeeding at maintaining my health, and I do get some activities done.

But I don't have a life. I feel as if my life is not my own.

I am seeking help. I hope some help will be forthcoming. But much of what is offered isn't really helpful.

I can sure understand. My Sweetie is in the early stages of dementia, and I'm not looking forward to things getting worse.
emoticon emoticon

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9/30/13 12:51 P

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You know you're a caregiver when you put your goals on hold to care for the needs of other less able family members. We went from empty-nesters to a house with two ladies in the later stages of demetia. Where is Gods mercy?

"Excellence can be attained if you:
Care more than others think is wise,
Risk more than others think is safe,
Dream more than others think is practical,
Expect more than others think is possible."



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5/4/13 10:30 P

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Boring and hectic. Yes, I can identify.

Sweetie doesn't mind my driving him, but he misses the freedom of being able to go out when he wants.

I didn't ask the doctor to take his license away for me. When Sweetie got the letter from Motor Vehicles it was as much of a surprise for me as it was for him. I was dismayed because I saw no reason why it should be that way. Now, though, he's deteriorated. He's liable to go out and forget where he was going and when he was supposed to come home.

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5/4/13 9:31 P

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That is going to be a problem as he hates to ride with someone else. He has kept some of the habits in driving that he was taught at the Police Academy at various workshops. He has never lost the method of pursuit driving. I used to tell him "since you don't have a degree in Nursing and I don't have a degree in Law enforcement, I'll handle my end." Still tell him that frequently and more now since he has retired and had his stroke and broken hip and now with low oxygen saturation...which is causing his dementia.. At least my days are now a mixture of boring and hectic. Kind of hate to have doc. have to tell him but, rather have him mad at doc. rather than me. .......Take care and stay Safe.

Michele

Edited by: MICHELE142 at: 5/4/2013 (21:33)
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5/4/13 8:22 P

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Ugh! Wow...my condolences on the driving issue. Taking the keys away from someone who does not want to stop driving is a problem.

I was spared the duty of being the Bad Guy. The doctor was required by law to report anyone with various health conditions to the Department of Motor Vehicles. And Sweetie got a letter from the authorities telling him he had to turn his license in. It's been almost two years now, and I have to be the chauffeur. It also means that his mobility is limited. I don't know if losing his license had anything to do with the way his mind has deteriorated or not. Being in the house all day is boring, and he's getting forgetful. Vascular dementia.

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5/4/13 3:22 P

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Afraid there are many things that will be around for awhile. My main problem right now is how an when to determine whether DH needs to give up driving? Road with him today an no problems other than him trying to keep up with the younger generation. When the time comes when he should stop driving, I really do not want to be the one telling him.........

Have a great weekend.

Michele - Northern Kentucky


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5/4/13 1:44 P

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Hi, Michele...oh yes! I'm getting used to it! That's how it is and it ain't gonna get any better, I'm afraid!

But I enjoy what I can when I can. Right now we have sunshiny weather, and several days of it. I'm going to have a good time.

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5/3/13 11:24 P

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Get used to it, there are times I can't remember my phone or cell phone number! Ask me the last four numbers of his social security and I'll rattle them off, ask me my last four numbers and I have to say the whole thing in my mind before I answer. Life is just grand when your having Fun.

Have a great weekend. ......... Michele

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5/3/13 11:16 P

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It was my turn this time. I had a wrist operation, and receptionists and nurses kept asking me for my birthday as a form of identification. Sweetie's is so automatic for me, I had to really think hard to remember who I am in all this.

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4/12/13 6:13 A

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Yes, Michele, true! My Sweetie is getting forgetful and I have to be the one who knows what's what around here and gets things done.

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4/12/13 12:54 A

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You know his medicines by sight,
You know the last for digits of his SS#,
You schedule all his appointments.
You know his date of birth and dates of surgeries
Keep records of his vaccinations
The pharmacy and doctors office staff know you by first name and by sight.
You know how to do minor repairs around the house,
You've become a mimi car mechanic,
You know when you do it ALL.

Edited by: MICHELE142 at: 4/12/2013 (00:57)
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3/21/13 10:05 P

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...you know his birthday to tell the pharmacy or the check-in at the doctor or wherever, but you've forgotten your own...

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You know the meds you're giving by sight and sound from the bottles

If nothing ever changed,there'd be no butterflies


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10/22/11 1:25 P

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You know that you are a caregiver when you have to get a sitter to take care of DH when I go out.

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the clinic calls to schedule an appointment so you automatically start rattling off DH's info and they interupt and say.... "actually you haven't been seen in over 2 years, your doctor asked us to call and schedule YOU for an appointment for yourself." I couldn't believe it had been that long since I went in for myself.... but its true.

*Deb
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Psalms 31:24 "Be strong and take heart, all you who hope in the LORD."

Ecclesiastes 4:12 "Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken."



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When you've come to REALLY appreciate Automatic Doors and Automatic Door Openers (when they're working!)

When you're pushing your caree in thier push chair (b/c the electric was low on battery) to the bank across the street from where you live, and the bank manager sees you and comes and holds the door open for you.

When you get to the bank and realize you forgot the checks you were cashing (because you were busy trying to get your caree & everything else out the door!), and you're mad b/c that means you have to walk back home & get the checks, and it's hot outside & you're wearing black pants (the only things that fit)... but you're thankful your caree can wiat in the bank for you :).

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7/13/11 9:39 A

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...when going to the home health office to pick up condom catheters will be the highlight of your day...maybe even the happiest moment of the week! Those things are lifesavers - I haven't gotten a decnet night's sleep since we ran out!

Even if you're on the right track, you'll get run over if you just sit there.
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7/4/11 9:28 A

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You know you are a caregiver when you fight with your DH because he must sit on the toilet now because he hasn't "gone" in 5 days. Sitting there means you have to transfer him, of course.He yells back NO!" But you persist and then go fix a glass of hot water and lemon and sweetner for him. Then you yell that he must drink it even if he does not want to. Then you put in 2 suppositories-one did not work yesterday. Then you set a timer for 15 minutes so he will have some sense of time.

Male aides tried this the last 3 evenings with no result. I am really trying to "train" DH to do this with the aides to save my back and knees. the system was working but then I went on summer vacation-so I am here all day. I think he resorted to his "old" tricks.


I have had lots of advice for this. Thank you all. I have a vacation (away! alone!) starting Aug. 4th. His brother will have to manage this. Yeah!

chris

Today I stop and think before putting anything into my mouth. HALT! Hungry? Angry? Lonely? Tired?


It feels like I am not moving, but I guess I am. Even turtles eventually move from place to place. chris


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7/3/11 8:02 P

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Happy to do it,Schatzy, that's what we're here for (well, one reason we're here...)

Edited by: RHALES199 at: 7/3/2011 (20:02)
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6/26/11 9:24 A

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You know you are a caregiver when....

..... you have a breakdown and are ready to lose whatever was holding you together just to find out that there are really great friends out there and you are not alone!

emoticon emoticon

Sometimes you just have to smile, pretend everything is okay, hold back the tears and just walk away.

The democracy will cease to exist when you take away from those who are willing to work and give to those who would not.
Thomas Jefferson

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6/26/11 9:19 A

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I agree with COLT2008 with the looking up your own medical history but knowing all about your DH's and CTUPTON with the advice.

I was asked my date of birth the other day and actually had to look at my ID card....

The unwanted advice I am getting is from D's family. They are still at it. I got to her this after telling my SIL that her brother lost so much weight was: "How could you let this happen???".




Sometimes you just have to smile, pretend everything is okay, hold back the tears and just walk away.

The democracy will cease to exist when you take away from those who are willing to work and give to those who would not.
Thomas Jefferson

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6/1/11 6:20 A

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You know you're a caregiver when you leave your home n the evening because you don't ant to chat with the health aide.

Today I stop and think before putting anything into my mouth. HALT! Hungry? Angry? Lonely? Tired?


It feels like I am not moving, but I guess I am. Even turtles eventually move from place to place. chris


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3 rugs... yep, that is crazy... but I totally believe it!! (we had a freind who used a manual chair and had scatter or area rugs on his floors (to 'save' the carpet or whatever type of flooring it was, or whatever...), and yeah, I can totally see getting rugs caught in an electric wheelchair!!


When you want to tell your caree either:

'gee, honey, you DO realize I just mopped the bathroom floor yesterday, right???'

or, 'honey the mop wants to thank you for the excercise you've made me give it this week!!'

[in other words, thanks to DH, I've had to mop the bathroom 3 times this week. and yep, two of those times were on consecutive days!!]

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3/30/11 7:20 P

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I definitely relate to rescuing cords from wheels on the wheelchair. How about the time I came home to 3 (3!) rugs would up in those wheels. Two small scatter rugs AND the living room 8' by 10'


That sounds impossible--but true! So.. we have no more rugs in the condo.

A neighbor man came to my rescue and helped me cut the 3 rugs out from under the wheelchair.

Today I stop and think before putting anything into my mouth. HALT! Hungry? Angry? Lonely? Tired?


It feels like I am not moving, but I guess I am. Even turtles eventually move from place to place. chris


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COLT2008's Photo COLT2008 SparkPoints: (42,658)
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3/28/11 8:54 P

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..you can list your spouses medications, history, and doctors phone numbers off the top of your head but have to look up your own.

*Deb
Wisconsin, Central Time Zone

Psalms 31:24 "Be strong and take heart, all you who hope in the LORD."

Ecclesiastes 4:12 "Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken."



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RHALES199's Photo RHALES199 SparkPoints: (27,179)
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3/27/11 8:28 P

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when you've lost count of how many times you've had to rescue a stray phone cord, or some other type of cord (or, for those who ahve 4- legged pets, an animal) from the wrath of your caree's wheels... too bad we can't so easily save walls & corners from the same wrath!!

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3/27/11 4:36 P

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yep, I can relate to that last one!!! except in my case it's been friends/ family members giving the advice...

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CTUPTON's Photo CTUPTON SparkPoints: (111,072)
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3/27/11 11:31 A

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......when strangers go on and on giving you advice and really think you should do it.....like you (after 5 years) don't know already what your caree needs .....and you either tried already to set it up or you are just overwhelmed trying to stay afloat.


I have to remind myself next time to mostly listen when someone is explaining the problems in their fife. I hope i have not done the above to other people without realizing it.

I know people are just trying to help.

Today I stop and think before putting anything into my mouth. HALT! Hungry? Angry? Lonely? Tired?


It feels like I am not moving, but I guess I am. Even turtles eventually move from place to place. chris


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RHALES199's Photo RHALES199 SparkPoints: (27,179)
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3/16/11 2:30 P

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you come home (from shopping or whatnot) and seeing a perfect stranger in your house visiting with your caree no longer surprises you, becuase that's usually a new home health nurse or supervisor and you knew they were coming but forgot about it.

When you're tired of having to tell said nurse your life's story. Or explain/ answer questions about your caree's health. Especailly when they are the very same questions you answered the last time the nurse was there!!!!

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SCHATZY25's Photo SCHATZY25 Posts: 1,057
3/10/11 7:56 A

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... your phone is attached to your ear! Because all the calls you are making in DH's name, not to speak of the ones you have to make for yourself and the kids (appointments, doctor calls, resources, schools, etc.) you wish you could have a phone implant...

... everyone thinks you are not busy enough and should be able to return calls right away..

... you leave your cell phone at home to be able to relax...

... you try to fill out paperwork online and the computer crashes...



Sometimes you just have to smile, pretend everything is okay, hold back the tears and just walk away.

The democracy will cease to exist when you take away from those who are willing to work and give to those who would not.
Thomas Jefferson

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3/9/11 7:48 P

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chocolate frosting all over the floor...I can totally imagine that!! lol...

My hubby is due to get a new chair in a week or two, his is now over 5 years old. I got to see all the junk on them when I cleaned the Strawberry Jello off last week...


here's another one: when you & your caree go to a Legislative Hearing regarding Medicaid in your state and at least 3 of the State Legislators recognize you/ your caree!!


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CTUPTON's Photo CTUPTON SparkPoints: (111,072)
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3/9/11 7:30 P

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One of the "best" events was having a chocolate cake with chocolate frosting on the kitchen floor. And yes the wheelchair spread it around the condo. A couple of grease spots are still on the bathroom (white) door. And you know what people thought that was, right?

Today I stop and think before putting anything into my mouth. HALT! Hungry? Angry? Lonely? Tired?


It feels like I am not moving, but I guess I am. Even turtles eventually move from place to place. chris


 current weight: 249.0 
 
276
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CTUPTON's Photo CTUPTON SparkPoints: (111,072)
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3/9/11 7:28 P

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Yes, the paperwork is a huge source of my anxiety.

And I really should scrub the footplate area of the wheelchair. After 5 years it has collected quite a bit of crud.

Today I stop and think before putting anything into my mouth. HALT! Hungry? Angry? Lonely? Tired?


It feels like I am not moving, but I guess I am. Even turtles eventually move from place to place. chris


 current weight: 249.0 
 
276
268.25
260.5
252.75
245
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