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Wow we must have all been busy this week all has really been quiet. I'll be so glad when it gets warm enough for MIL to walk outside. She needs the exercise.
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I know what you all are going through. Breathe deeply and realize that if you did not do it, who else would. It's not easy. My mom cries several times a day as if someone just died. I do all chores daily. Get out may 8 hours per week - and yes I go to Wal-mart and sometimes a movie. Hang On ! Don't feel sorry for yourself, it will only depress you. I love music and it picks me up; but if a sad song comes on mom will cry. She use to tell me she was trying to remember but now she doesn't. I love her and I just have to remember for her.

God Bless you all
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Hi Roxie,
I am 24/7 caregiver for my husband who suffered a massive debilitating stroke in his cerebelum on May 22, 2008. We did not know he hd a malformed vein until the accident when he fell from his bike, hit his head, later suffered a severe headache and then during the course of his bike ride he had a major brain bleed. I have done everything in my power to help this man live and survive this. It has not been easy and is certainly a challenge. However for your own health and well being you do need a break once in a whike, so respite is what you need. If no one can help you in your family call your local senior resource center or state counsil on aging. They can direct you to some non profits who may be willing to assist you in getting some grant monies to let you go 4 to 8 hours a week to go get something done for yourself. I was fortunate to have been able to get this, and even if it is only to go get a haircut or massage, it is quality time for yourself. I have hired help now to come and do my husbands chores with the yard so I do not have to fret about it, I take my laundry out to be done, and have someone come in to help me with keeping the house clean. It is a hard job caring for someone, but I think often of the gift God has givenme in the extra time I have with Jerry. Had he died I would have been so devistated. I have so much to be thankful for, and I value every precious moment I have been given ti tell him I love him, to kiss him, to d my best for him. As tough as it is and demanding as it can be, I am grateful for having been able to love my husband even in the darkest of journeys in our lives.
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I don't have mom at home anymore. We finally realized it was best for her and the family that she live in a nursing home. Very hard decission and a lot of denial from some members of the family. As it turned out, I've signed an agreement with the state that I will be here, visit mom, take her places, see that her needs are met, etc. The family is contented with that. However, my wife is still at our home in the other end of the state while I'm living at mom's house, seeing that her needs are met and attending to her affairs. Living here alone, the wife and I thought it would be good for me to get a dog, and I have. Now it's time for me to go to visit the wife and we're not allowed to have pets where we live. This dog has become a part of my life. He's with me every waking moment, and sleeps at the foot of my bed. I love my pets and feel that I'm entirely responsible for them. Now I'm having to put him in a boarding kennel while I'm away. It's almost as hard as it was putting mom in the nursing home. Mom having been in the nursing home for a little over a year now, I feel certain that they are giving her the best treatment available. I'm just having to go through the same emotions with the dog, leaving him at his vet's office for 10 days. I'm going to miss going to see mom and miss having my dog with me. I need the break though and I need to spend this time with my wife as we'll be celebrating our anniversay together. I'm sure I'll get through it, one day at a time, if I can just remember to live in today, or the moment if need be. That's the one blessing for the Alzheimer's patient. Mom is at the stage that she truely lives in the moment. I'm very grateful that she still knows me. Though she sometimes thinks I'm her younger brother, we still have that common bond of being family and we have enjoyable visits. I just go to her world. She can no longer come to mine. When I go to her world, shes calm and we have a wonderful time together. Thanks for letting me vent/share. God bless you all!
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Its okay Anne I think we all just get overwhelmed so Im not offend are the rest of yall? When we took MIL in she had a cat we couldn't take the cat cause we had all dogs. A neighbor wanted the cat. But after several months the poor kitty got run over. It was really sad. I hated it but I knew she would be dog meat here. Instead of the neighbor not talking about it she had to go in great detail. Poor MIL she had forgotten about her kitty and had to mourn her again. I think you just try to pick and choose and do the best you can with any situation. So who is to say it is wrong. Like my hubby says if they want the job and think they can do better let em. He much rather be able to come home and sit in his recliner naked at nite lol.
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Dear Anne, something will happen that will be the determining factor. When that happens, you might be able to figure out what the next step is. That's what happened to my Dad, and is still happening. Too bad about the doggie though, not sure if you want her to move in with you or not, just to be able to keep the dog, hard decisions. I had to force my Dad to move, actually I tricked him, otherwise he would never have come. I hated doing that, but had to for his own safety and well being. This has been a very hard transition for him as well. Praying for you angel Anne,
Nauseated
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Mom has needs; physical, emotional and social, and I can meet all those. I want change, but I hate to force it. Wish she'd just say, "I'm done here; don't want to be alone anymore. Want to be by you for the help... She is willing to move, if I can house her dog, but Senior subsidized housing won't allow dogs. So she fights it. I hate to take the dog away from her, but I hate paying all the vet bills too. I'm waiting for a happily ever after ending that will never come. So if I wait long enough, nothing or something will happen. Thank God there's no emergency at present. Though cancer is scary. Sorry. Guess I'm just venting. Waiting for a happy ending. Too much television as a child. LOL
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Dear linden and lazor, didn't mean to just run right over you and not acknowledge you, when I jumped back into my junk. Please forgive. You are both admirable ladies, to be sure. Dear Neon, thanks. And Naus, too. God bless you all, too.

You know, don't mean to say, "That won't work...this won't work..." But one thing I didn't add to the mix, is that Mom has a dog. Easy to find a place for her without one. Hard to find a place to accept her dog. Mom's always had a dog. She already lost her husband. To take her out of her home means she'd lose her dog and house, too. That's a lot of losses, on top of ill health. The house is too big, and expensive to maintain, and she can't keep up with all of it, and we can't either, distance or no distance. It's too big (5 bedroom, 2 sets of stairs, 2 fireplaces) for one person, and she needs to sell and downsize belongings. (More losses.) I want to move her, but then it would add work for us, having to do the move, and care for both. I idealize her being close, so I could watch her care, but she has never particularly liked me, and visa versa. (You get the drift...) She'd also be losing her church activities, friends of 50 years, clubs, shopping haunts (bummer!), etc., just to be closer to me. My decision to leave her there for now was to provide grace during the stress of Cancer, etc. So she would be in familiar territory, not have to grieve the loss of a dog. I wanted to move her, to "force" her to want to be by her husband in a nursing home by me, but we are all happier with the peace verses the drama. I know I'm talking in circles. What's right for her? What's right for Dad? And what's right for my husband, son and me? Who gets to choose? I figure that as long as she is not a danger to herself, she can stay there...or? Doesn't matter what I do, I'm the bad guy. She has needs
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What's the saying? Too many cooks spoil the broth? Too many doctors! When you have too many doctors working on one patient who "specialize" in different areas, may miss a diagnosis elsewhere. Good day everyone! Nauseated
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Oh Anne, one more thing I forgot I know your mom is distressed and not comfortable and you want to minimize that but she is going to be that way no matter where with all she has going on so to be with you and a warm arm around her sholder and comforting whispers will help tremendously.
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Anne, I truly understand, I have mamma drama to, she used to shop around for doctors to and if they didn't tell her what she wanted to hear well off to the next one it was like the person with the most doctors is the sickest or wins?? pick one. Anyway This doctor knows she does not listen to him or anyone else she is going to do it her way. She has a medical dictionary from 30 years ago and she swears by it and is always diagnosing herself the best thing I have found is to say yes that sounds like it whatever it is and write it down to tell the doctor for your next visit. She hardly does this. Bringing you mom closer will save you a lot of stress, you will still have some but it won't be so bad. Don't worry about whatevery one else thinks or says you don't see them there do ya? Believe they only sound off and gesculate just to pretend they are plugged in they don't give a rats ass about anybody but themselves. Do what you have to do, stick to your guns and do the best you can by your mother and take what she says in small doses and throw the rest away. Since I've done that people have been telling me what a change they see in me although today is one of the worst days at work, I actually cried over something one guy said and I've been here over 5 years and thats a first and I am not a crier ??? must be hormones just as good an excuse as any. have a good day
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Neon, I think you're right about moving my Mom. Otherwise, she'll just keep going to the next and the next and the next doctor. I'm sure they love taking her money. It makes me angry. Actually, I am glad I switched her from one, who was killing her with the prescriptions. After a hospitalization, 5 thought she had dementia. They said if they didn't decrease her meds, she would have died. So that was a necessary move. But upon follow-up consultations with these physicians, they all recanted dementia. I think she's just in and out of it, and too early for firm detection, even by so-called "Specialists." But the Mama drama will continue indefinitely. My husband said she's "shopping" for health care, like one would for a new wardrobe. A sick hobby. Not that I don't want her to have health care, or help. But 2-5 doctors a week is ridiculous!!! I wish I could go with her to some of these appointments, and be an advocate and discerner. Hard to do living 200 miles away. Perhaps it really is time to move Mom. Before or after Cancer surgery? Before, during or after radiation 6 weeks of radiation therapy. I thought about having her follow through on the Cancer surgery, then moving her close by, to perhaps a temp location for radiation treatment. Whatever I do, it will be hard on Mom. That's what I'm trying to ease, is her discomfort.
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upfront and blunt although at times hurts peoples feelings until they get used to the truth is the only way to be
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Thanks Neon I needed that. Our caregiver group leader told me I needed to update the family with everything. I tried that at first and the family just didn't want to hear it. The group leader said I should email it to them. Well the way this family has behaved I don't care to do that either because something will be taken and misinterpetated. One son calls not regularly but calls. Daughter calls once a week but she is prescription junkie. The other son, nosey lying wife calls when she wants to cause trouble. My husband said to tell her next time Does Jack have a phone if Jack wants to know about his mother talk to his brother or me. Then I don't have to listen to her crap. Carey's mom has trust issues and because I have not lied to her and have been upfront and blount she has excepted me with open arms.
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Dear Dear Anne, yes a merry go round it is. I think with all the problems you mom is experiencing it is depressing for her she knows her body is just breaking down one thing right after the next. I know 200 miles is a long trek, before i brought my parents down it was a 639 mile trek one way had a brother who lived perhps 100 miles away and couldn't make it but once every 10 years, thus I brought them here. My mom has stenosis to and i think she has dementia will know more about that later next month. I took my mother away from all the doctors and introduced her to a GP if she has a special need we go to the specialist but hr GP is herprimary doctor, I believe too many doctors confuse the sitation all these specialists want to be specialists. So they want top dog. Try to pare her doctors down. I am sure she is afraid of all the things going on with her try to find someone to help you and if necessary it is better for her to come live with you. IT IS NOT EASY BELIEVE ME but you have a better handle on things.



Dear Lazor, I don't like a liar either and so glad your MIL recognizes her as what she is. As a professional caregive I understand that you walk a fine line but it is my belief that if you are honest with the family and explain that you are there to "do all those things" they can't be bothered with they will have to trust you as far as her medical help goes. If they can't deal with the fact that Mamma is at the end of her life that is their problem. Not so easy I know but facts are facts and truth is truth and it is more important for the facts and truth be related to the patient not the others.
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Well folks here's another vent... Yesterday the Sister in law called and left a message while we were at the Urio. I just erased it cause She is the one that lies and causes problems. She is new to the family and she started out being helpful. But she is the one that lied right to my face. Anyway she called last night and interrogated me to the max. I chose my words careful because I do not trust her. I really was angry just to here her voice on the phone. Then she talked to MIL and question her. Well afterwards I went and vented to Hubby and we vented together. I returned back in the room and out of MIL mouth came Joan says I have to pay income Taxes. I said no you don't. She said she was a nosey busybody and like to get in everyones business. I laughed and said yes she does. Just because she works at a hospital(well know one here) she thinks she knows it all and has all the answers. But yet don't do anything but stir up trouble.
Milaw was staying with her and son one weekend a month to give us a break. Then in October it stopped. I told my husband Joan did something because thats the reason she stopped. Now its beginning to surface. This is the same woman that was suppose to care for her the weekend they sold all of her belongings( not telling us what they were doing) and only left her an office chair to sit in all day long..... I don't like liars !!!
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My client went to the geriatric dr. yesterday. I was not allowed to go because of Hippa Law. Makes no sense as I am the one with her everyday.
Anyway, the daughter called to tell me results. This Dr. is in the top ten nation wide for his care of dementia/alz and I was floored at some of his suggestions.
When she refuses to comply, as in putting on her shoes, I am to take her by the hand and gently assert myself and either help her or put her shoes on her. No way is that going to work.
Suggestions such as this confuse me. I have to trust his training and expertise as this is his field, but she is still very capable of putting on her own shoes. And experience has taught me if I do too much for her she will simply let me do it and end up depressed.
He was impressed that she was doing as well as she was, since he had not seen her for four years for initial diagnosis. He did change some of her meds, and decreased some. So hopefully her energy will increase some as she was taking too many antidepressants.(I can not get a straight answer as to who put her on extra meds)
So on top of day to day frustrations I have the family to deal with. As I have said on many occasions my heart goes out to those who have 24/7 care giving. I at least get a daily break. But getting the family to do some things for her care is my biggest headache.
But the Dr. did make some suggestions that I will try with her. Sometimes what works one day does not work the next.
One of my biggest obstacles is the daughter from out of state that is still in denial about her condition. When she visits I am a wreck trying to keep routine going and sidestepping the daughters interference. But I am with this woman everyday and guess I will have to figure out a way to talk with the daughter and help her to understand she is not helping the situation when she interferes with some things.
I will have time to think about this as her next visit is not for another few weeks.
As a "paid" caregiver there is such a very fine line between doing everything for everyone. A constant balancing act. So, those of you who have paid caregivers helping you, please consider the position we are in at times.
We are there to make things easier for family, yet, we are the ones who deal with the day to day confusion, fear, anxiety, ect. of the family member needing our care.
It is like being a surgeon and having someone come in and say, "no, cut here, not here". I think I missed my calling. I should have been a very highly paid psychiatrist. We have to wear many hats to keep things going smoothly for our client and keep the family happy and informed.
Ok, I feel better and time to get going for another day of being the juggler.
Thanks for listening. God Bless
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I've heard that people can be good actors, too. Especially during early dementia symptoms. I have tons of documentation to share with Physicians, but they don't seem to want to collaborate on diagnosis. That's frustrating. I was told to be patient, because there will come a day when everyone will see the problem, and no one will be able to deny it. Living 200 miles away makes things altogether more difficult. Thinking about purchasing a Nanny Cam to keep better tabs on the situation in her home. But how do I keep her out of so many doctor's offices? I think they must laugh, and say, "Easy money!" or "Here, take a pill!" (Better living through chemistry. Tell you the truth, if we could find something to improve her mood...
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Anne, I think the doctors don't recognize what we do, because we know our family and they don't. They see that they are in good spirits, and don't see the things that we see everyday, and don't know how to diagnose maybe. Just speculation on my part, but doctors overlooked my dad's problem because they didn't see him or talk to him everyday like I did.
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Another problem with Mom is that she is seeing several other doctors (new ones every other week) for various and sundry other conditions. She has been told she has spinal stenosis, degenerative disc disease, a little scoliosis, bulging discs, and numbness and tingling in her legs and arms. She's had surgery for her back already, (widening something...) knee surgery, leg veins "stripped," and a hysterectomy. She has seen a foot doctor several times in the last year. She saw a Cancer specialist last year because she had lost 65% of her body weight for some reason. No cancer was suspected at that time. We suspect is was due to her 200 mcg Fetanyl use, which probably almost killed her (according to several consulting Physicians). I switched her from Physician to Geriatric Specialists trying to get help for her. She leans towards depression, but the meds don't help. I think it's due to a bitter spirit, although I don't know why she is that way, and don't think it's a medical condition, but a spiritual one. She's also been diagnosed as having cysts on her kidneys, and has a follow-up appointment on Monday to discuss it... More doctors, and more appointments!

One Physician suggested she go to a Geriatric Psychiatric Ward at one point, last year. I drove down 200 miles to do just that, only to find her in good spirits (at that moment), cooking dinner for herself, the house clean, and the laundry caught up. She was surprised to see us. She was doing so well, I didn't have the heart to take her to the place suggested. On what grounds would she be admitted. I'd be afraid they'd admit me if I tried that day, she was doing so well. But other days...boy! Slam dunk admission. One day I told her about the ridiculous amount of $$$ spent on medical copays and deductibles only to have her say, "So what do you want me to do, kill myself?" Where did that come from? I'm learning that she is allowed to complain, but me, never. And she can argue, but I dare not. Just go along with the Mama Drama. Some people have talked to me about her declining cognitive abilities. And she's even gone to a Neurologist for memory and cognitive testing (but no diagnosis). Perhaps she is early stage... Either that, or I need a shrink soon, for she really is driving me crazy!!! I give her slack, because she has the ability to enjoy familiar social activities, but I handle the important things, like finances. She scares me, but I don't know what to do. So far, I can get no back up from the Medical profession, or direction, etc. I don't know what to do, but I know something is wrong with Mom. I am tired of status quo, and not sure what direction to go. Any suggestions???
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I feel like I'm on a merry-go-round with Mom and don't know how to get off. We were just getting ready to move her close by, only to receive news of a diagnosis of breast cancer, with needed surgery asap, to be followed by 6 weeks of radiation 5 days a week. She doesn't drive, and her closest family member (me) lives 200 miles away. Public transportation has been a problem, and she often has to wait 1 hour plus, for them to pick her up. She lost her license due to blacking out while driving, and medication use. Narcotics and driving don't go well together. She drinks alcohol at times, too. I opted for mercy, letting her stay in her own home of 38 years while recovering from surgery, rather than subject her to the added stress of relocating. And I am NOT moving there. No way!!!
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Dear Sue, welcome! You're a sweetie. Neat to hear about another who compassionately honors her mother, out of respect for her position, and in love. And seeing her in such need. You are a sweetheart. I think there's people who sacrifice, and will one day be glad they did, and live with no regrets. The heroes. Then there are the siblings, who make excuses for themselves, about why they can't help. Will they have regrets? They just don't feel the responsibility to care for the ones who cared for them. I don't get it. Selfishness! Sad. God bless you for caring for your Mom. That special place in heaven will be a lovely someday.
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Wow, my heart goes out to you all. I thought I had it bad! I live with my mom, who just turned 90, and who has alzhiemers/dementia. It is a HARD job.

I also have a sister and 2 brothers who refuse to help in ANY way. I have no idea why they dont call or visit. My mother was a great mom.

Before she got real sick she asked me if she was a bad mother! She was a really good mom. Then, she made me turn the picture I put on her table of my sister and brothers face down. Breaks my heart because it broke hers.

I guess they all have full time jobs, kids of their own etc. But so did I! I had a career of paralegal and I have 3 grand babies and a step grand son! I gave up my career for my mother. At least I get to see the grand babies when ever I want.

Anyway, it is a hard job; watching my mom turn into a strange person that is nothing like my mother was. She used to be a vibrant, independant woman. Now she just lays in bed all day and I cant remember the last time she laughed or even smiled. She is bossy and mean and I have to talk and argue to get her to do simple things like wash up, take a bath or brush her teeth (she still has her teeth!). And it's no fun when she has bathroom accidents.

She is helpless. I guess thats why I care for her now. She cared for me when I was a helpless baby, now it's my turn. A little support from my brothers and sister would be nice. My sister does call me or email me once in a while, and she came over on mom's birthday. But my brothers: forget it. It's like my mom is already dead. sad.

Hang in there all you care takers. There is a very special place in heaven for you all!
luv,sue
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Excellent suggestion!!! I am tape recording everything with a little pocket size digital voice recorder. Everything that's said, both in person, and over the phone is recorded as well. Legally, all you have to do is tell them you are recording. Talk about excellent record-keeping! I record what the doctors tell us as well. My Mom can never again say, "I never said that..." Unfortunately, we have to protect our loved ones, and ourselves as well. Every little bit helps. Thanks for your input, lazor. Hugs for all your hero efforts!
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Yes Anne notes about everything. I even write notes on what the family does and says to me or do for her. You never know when it may come in handy later on. Ive recorded their visits and how she was when she went and how she is when she returns. Ive recorded conversations that they have had with me and all the crap that they have tried to pull over on us. Documentation!!!! It works folks. I learned this from an old job I use to have. It helps with siblings trying to get over on you especially if you have to go to court. It really is in your favor with the judge seeing you document everything and they go up there sounding like Bubba. You dont have to go in detail just little notes to jog your memory and sometimes just writing it down helps relieve stress or at least it helps me.
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Praise the Lord for your attentiveness, loving care and concern for your MIL! What a blessing you are to the whole family, to be sure! I, too, am impressed by your thoroughness and attention to details with your MIL's health care and record keeping. What a great idea, and way to positively affect the system. Thank God you have found a good Physician. Praying MIL will recover, which will be a help to you, as well. Blessings!
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I think I impressed him when I had all her meds typed out. Dosage and whats for. I had all my dates of what happened with her urinary tract infection what was use to treat it and I answer all his questions. I listen to what he had to say and asked my questions also. First I was impressed by the fact they numbed her before trying to cath her for a speciamen. They were so considerate of her feelings. He talked to her and to me. I did the same with the last URO but it was like I was a dumn bunny and he refuse to talk with me or hear me. I was like on another planet. I called this new URio and told them the problems I was having and even the nurses and the whole staff was so warm and caring. He is going to work with us on her infections. I can just get her to pee in a cup and he will check it He even which is what I have asked for for 6 months will put her on low dose antibotics. He is starting with fixing the problem not just putting a bandage on it YES there is a God.
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Dear lazor, praise God for the new Dr. listening. Hope is helps your MIL and you. Would love to know your strategy, and what changed. Thanks
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Make some snow cream Nauseated. Neon youre doing great cause your well wishes worked. Took MIL to a new Urio. DR. Man I was impressed. He said everything that I had been trying to get the other one to do.. Its amazing how much you as a caregiver knows but yet some dr just refuse to listen. This dr listen YEAHHHH.
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One of my favorites was a neighbor of yours somewhere in that territory,
John Denver so I will listen to Rocky Mountain High while I'm at it and all his other wonderful hits.
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