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As I cared for my hubby after his liver transplant, I found my self so sleep deprived I was worried I was making clear headed decisions and making sure he had the exact meds, etc...this was only 4-5 months of round the clock care and zero respite. Not one minute. We had plenty of "blowouts" as I was simply so tired (sleeping in 20-30 minutes snatches when he was asleep)....after only those relatively few months, when he did go back to work, I had a complete breakdown--he went on a 2 week business trip and I think I slept for 8 or 9 straight days, getting up only to eat and shower. My hubby kept complaining to the kids that I wasn't doing anything for him (something he stands by to this day). He doesn't remember the 3 times a night blood sugar checks, the meds I tracked, the drain bulbs I cleaned out and measured...the diabetic diet he was on--not one person helped me as he was immunosuppressed and all the grandkids were walking URI's. It was just me. Now I say this to tell you that SLEEP is so important. You aren't getting enough and your body WILL crash and burn on you. Get some respite. Can you go to your church? Other family?
God WILL exalt you on high for the loving care you have given your mom!! You are going beyond the mark, IMHO. I hope you can get some help. and soon. You deserve and need a break.
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Now that your Brother has cared for your Mom for a while was she as difficult for him as she has been for you? It was my experience that whoever was around the most seemed to get the worst behavior from Mom. That would have been my Stepdad before he passed away. As he was dying he told me I was gonna have *$#@@ with my Mom. I had seen stubborness in her that was present before her Dementia happened but I had no idea what I was in for. She was at home for a year and a half and it was $#@@. She had a hospital stay and her Dr who is a Saint convinced her to go to a nursing home for Physical Therapy. He convinced her that if she did not she was going to be in a Nursing Home permanently soon because she was in no shape to care for herself at home even with help. To my surprise it was all arranged when I got there for her discharge from the hospital. I was in shock! I cant remember if Medicare paid 80 or 100% of the Nursing home charges. She did have a medical supplemental that may have picked up the 20%. Mom cooperated and did well while she was with physical therapy staff but once back in her room she refused to use walker and continue to fall constantly. When I would visit and she would be stumbling around room and I would ask why she wasnt using walker she would well...not be very pleasant. Sadly because she was so stubborn she did not leave nursing home. I got outside help and along with the Nursing Home we got her qualified for Medicaid. All but $60 month of her Social Security and retirements went to Nursing home and Medicaid paid the rest. Except for a few occasions she was sweet as cake with all Nursing Home Staff. Completely opposite from the way she was at home with me caring for her and home health folks that helped me. After a couple months of adjustment where she wanted to be taken home she did adjust and was pretty content. She was being bathed regularly, fed regularly, took her meds like a nice lady. This was not happening at home. In our situation my Mom did not would not take suggestions or instruction from her "child". So my point is your brothers experience might be a different one than yours is as a caregiver. If he has a difficult time with her also and doesnt want to help anymore BEG him to spend the endless hours on the phone to find YOU some help with her care. No one EVER wants to see their parent in a nursing home! But sometimes it works out for the best. Believe me if Mom goes to a Nursing Home your job is not over. There will be Drs to deal with if you choose to be involved. Plenty of paperwork coming in the mail if you choose to read it all and there will be visiting Mom and in my case lots of phone calls from the Nursing Home because Mom has fallen. But...it is not a three ring circus 24/7. Please let your brother help you. I think it is proper for a child male or female to care for their parents hygeine if they are willing.
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carespeaker1.....Excellent analogies! God knows what is going on and will forgive but you must also help yourself. I lived with my dad for 6 mos. 24/7 leaving my family at home to take care of him while he recovered from heart attack. 3 weeks into it had to put my mom into a alz/dem. facility. He had been caregiver to my mom for 5 years as she continued this journey. Fortunately she could dress, and eat and communicate but short term memory was shot. I gave as much support as possible but he was there most of the time. When I moved in she just lost it because her schedule and life as she knew it had changed. The last straw was her yelling at me and me back like a teenager would yell at their mom because they got grounded. She had hit my dad because he wouldn't get up out of bed to take her to eat (we had just eaten but she didn't remember). Fortunately for us we found a great facility however that's not to say the first year was easy. For that matter the last 5. BUT.....these people are trained to take care of alz/dem patients and they get to go home after their shift and come back refreshed. YOU/we don't. They get paid (albeit not enough but still) and WE don't. Please, please as others have said before, look into every outlet you can for help. Church, daycare respite, medicaid, elderly social services. Again as said before......if you are down for the count she has to go somewhere or some else has to take care of her. Don't feel like an awful daughter for letting someone else take care of her. If you can get the help you need it will only help you be a better and more loving daughter and he able to help her better. Good luck and God Bless
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Thank you all for your support. yes my brother took mom for a week and it helped. I am still tired and week. my brother still try to help me. I hired a caregiver for 8 hours a week.
but I do not feel caregiver give me a lot of help. they do not clean the way I want ( she does not clean her hands after bathroom as suppose to be. she saying washing hands will dry her hands). my brother telling me you should expect that and accept it. I am scared mom or I catch disease. am I going too far! not sure may be. any way I will try her and see if she will give me some break. also I need someone to take care of mom while I am getting my treatment in hospital for being severely anemic.
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If this caregiver doesn't do things the way you want, then ask for another one until you find one that does or at least you might have to compromise on some things. No one can do things the way WE do and sometimes we just have to give into that but they should be willing to work with you if you insist on some things. Yes, it can dry their skin out but she could at least use a wet rag then following with some lotion. As far as your hospital stay, check into a facility that offers respite plans. My mom's takes patients for a week or 2 for those that have to go out of town or in the hospital themselves. Good Luck and God Bless
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I hope you are still coming back to check for new answers because I suffered the same way for 1 year and it was the most hellish year of my life. I finally mentioned it to my mother's doctor, and the doctor said, "Why didn't you say something sooner?" and prescribed a very tiny dose (the lowest dose plus cut in half) of a medication that makes my mother sleep through the night. I had been violently opposed to medicating my mother for what I saw as being my own convenience, but the doctor explained to me that as the caregiver, I had to be alert and healthy in order to care for my mother properly. What if I gave her the wrong medicines because I was too tired? What if I drove off the road and hit a tree and killed myself because I fell asleep at the wheel. I have to tell you, I am SO glad I listened to that doctor. Not only do I get at LEAST 6 hours of sleep at night but Mom gets the sleep she needs too.
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I cared for my husband for nine months until his death last month. I also was worn out and tended to get a bit testy with him, though I knew I was screaming at the stroke. He could "go on" testing me for 12 hours straight. I asked my doctor for some pills to help ME sleep...they were already giving him meds that worked for him, but when your nerves are raw, it doesn't matter. I do not regret keeping him in a hospital bed in my living room. I miss him terribly...even the times he was mean and ornery. I have plenty of time to sleep now. He is at peace. He was my hero and didn't deserve to die in this manner, but we accept what God gives us and rest, rest, rest. God bless you and give you strength.
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Hope14, Of course the caregiver must strictly wash her hands! The top defense against the spread of germs. Teach her, teach her to use gloves, teach her to use lotion after washing. Teach her-require it! There is no workplace that does not require this hand-washing protocol, and you can require it in your home. Show her. Post signs in the bathroom. Post them in a language familiar to her if her language is different.
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Hope 14, if she isn't concerned about something as important as washing her hands, then what other care-related issues does she find "inconvenient"? I good caregiver has the correct tools, including a good barrier cream for the hands. What a petty point for her to argue with you about. You don't need that. No you are not being paranoid. Phone her person in charge and ask what the protcol is for their workers.
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You might put it to her that if she doesn't wash her hand after taking mum to the loo she WILL be ingesting urine and faeces - that should stop her in her tracks. Then go on to explain its place in cross contamination and infection. I lost count the number of times I had to tell care workers about hand washing.

Let me be very clear here.

It takes 25 seconds before the soap activates and cleans effectively.

The alcohol gels are only suitable for use in an emergency they are not to be used instead of hand washing.

After 4 uses the bacteria WILL grow on the gel.

Bacteria need four things to thrive food moisture warmth and time.

If you don't wash your hands thoroughly and if you don't dry your hands thoroughly afterwards then you will be contributing to bacterial growth and subsequent contamination.

Show her that. I wrote an educational book for care workers on infection and contamination and I can absolutely tell you that this information is correct. The senior infection control adviser of one of the world's leading heart specialist hospitals told me this when we met, and trust me she would know.
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If she refuses to wash her hands then she must wear clean gloves every time and please do watch for this one.

One care worker thought she wore gloves to protect herself and yes they do do that too. So when I caught her walking through from the bathroom to the kitchen WEARING THE SAME GLOVES she had had on when she wiped a residents backside I asked her what on earth she thought she was doing. So I took a substance that they use in training that lights up under UV light and asked her to repeat what she had just done - I gave her clean gloves and sprayed the substance on. She went from the bathroom to the kitchen and when we turned the uv light on she was horrified. it was on the floor, the door handles the doors, the handrail, the carpet to say nothing of what was on her clothes and even on her face and hair. She changes her gloves every time and I am absolutely confident that she will continue to do so.

Acid test by the way for hand washing. If you wash your hands properly and thoroughly and then dry them thoroughly you will be able to slip your hands into even tight fitting latex gloves easily. There are heaps of diagrams that show you how to hand wash properly - I would put one up in the bathroom and tell her to observe it or consider another occupation - her behaviour is too risky as it stands
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My wife and I care for her mother who has full blown Alzheimer's . We have someone come in for the afternoons when we are at work. We go through the same things everyone else does,but my mother in law is dialed into the kitchen. She rarely washes her hands and always wants to handle silverware and plates. She either wants to set the table or do her fersion of washing which means rub with fingers,dry ,and put away. We have dared for her for going on eight years. There is so much tension in our home. From the moment she wakes we deal with the kitchen or what do you want me to do. If we give her something easy she can't focus and is right back in the kitchen. Besides not washing her hands her vision is terrible. We have meds that need to be put in her eyes twice a day. We tell her each time not to wipe her eyes because the meds need to absorb. The minute we look away she wipes her eyes. We are so frustrated at this point. We do not get any breaks. My parents are both 98 ,live at home and need me at their home every day. My dad will call me multiple times a day. It is always we need to do something or other. Please understand I love my parents,but my dad just expects me to drop whatever I am doing and come to his house to take care of what is usually something minor. My sister lives close by.but I get the calls so between what we have going on at home and my parents I am ready to blow a gasket. My wife and I have not had a break in six years.
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Thank you for replying. I did changed caregivers. I was hiring caregivers through agencies. but it looks all caregivers who come to take care of mom have the same issue. they complaining about drying hands. I repeat all the time and wrote notes and a list that to make sure washing hands and make sure mom wash hands and this is not an option. but one of the agencies (the owner ) told me he can not provide me with a caregiver any more because I ask for too much sanitizing even I only ask to wash hands for 20 to 30 seconds after helping mom in her hygiene or cleaning toilet or touching trash or any house chore they do. It should be very acceptable. But it looks no one care. all they care about collecting money and not about health issues. I saw caregivers take wet cloth after rinsing (because of an accident mom had) water dripping on the carpet and floor. Once I say some thing that she should put it in a bag or in a container they do not like what I say. They agree with me in the moment then once they finish their day they complaining to their supervisor that I am over supervised them or I am asking for too much sanitizing. I do not over supervised any one. When you hire a new caregiver I have to make sure everything will be okay for mom. Make sure mom will be treated right.. make sure mom will get clean clothes, clean food (washing hands before they give her meal). I noticed many caregiver they leave the bathroom open when they shower mom. I ask the caregiver to close the bathroom and bedroom doors so mom will not catch cold. but they do it at the time. then the second time the caregiver forge. If I tell her to close the door she get upset. I noticed they are neglect, carelessness, and care less about hygiene. All they want to come and sit as a companion ship and watch TV (one of the caregiver asked me if she can sit and watch TV!!!!). mom has dementia she does not need only companion ship she needs help in daily activities, I got tired of caregiver, not sure what to do next. I am really tired. When I am tired I do not want to lose my temper when I help mom. I reached to appoint I curse mom ( like say your are shit). I never expected from myself I will be nasty with mom. I really love mom. I can not imagine the world without her. I know one day I will regret all this and I will wish mom will come back. After being nasty with mom, And rest may be a little I start crying and go to mom apologize. mom always forgive me. I feel guilty. How come mom forgive me and I am the nasty one. More than one doctor diagnosed me with chronic fatigue. They advised me to rest otherwise I will end up in a nursing home. Please understand I am not giving myself an excuse. But I really need to help mom as much as I can. some time I worry about myself who will help me when I can no longer help myself with this fatigue
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OhJude: Good catch on the gross gloves! Yikes! Yuk!
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Hope I had this with agencies and that is quite frankly why mum doesn't have agency carers in - that and the exorbitant costs for to a not very good job BUT and here is a really good tip. If you want carers to work under your routine (and by god don't we all) then you have to involve the agency from the outset.

When I interviewed the agencies (note this bit because they like to try to interview you!) I explained that I had some non negotiable issues that I was prepared to cover the costs of.

They would either wash their hands after every task OR they would wear gloves and change them after every task.

I would provide the gloves latex or non latex.

I would also provide hand creams that are dermatologically safe and

I would provide sanitisers for the areas that needed sanitising but

I would NOT accept the use of hand-gels in the house as we have running water and there is no need for them

I expected everything that was soiled to be disposed of and double bagged as is the health requirement or using the designated sanitised bins that I would provide (bearing in mind I had them anyway for when the carers weren't there.

I expected the commode to be cleaned after every usage in a specific way

I expected them to help Mum help herself as much as she could and not to do everything for her

Now this is the most basic of care skills. This isn't over the top at all. It forms the every foundation of basic performance not excellence in care. No takers from two agencies.

one said that because I had such high demands (pffft) it would take more time and therefore cost more.

I reported two agencies and didn't use the third hence me doing my own caring because if nothing else I know it is done bloody properly in terms of hygiene.

The social workers and I had a very heated discussion. She said I seemed belligerent. I told her she hadn't seen belligerent yet but if she wanted me to I was quite happy to escalate the conversation to belligerence. hen I took a deep breath and said this.

I don't KNOW what level of care YOU think is suitable; I don't even know that you understand the basics of basic infection control principles BUT I DO and I WILL NOT accept people who purport to be carers and no zip about hygiene coming in to MY home and making it unsafe for my mother. Do we understand each other now? GOOD - NOW YOU CAN LEAVE.

Im never good when rattled - they haven't been back! They sent others to make sure I was following my own practices and I am very happy to say the woman who came was gobsmacked that my records were so complete. I bet the social workers were too!
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I note these comments and am really worried about getting care in though I am really exhausted caring for my husband who was just diagnosed with lung cancer from asbestosis. He is 81 and I am 76 and now the hospice may send in care which should be OK I hope! I have been getting so bad tempered with him and feel so guilty - he keeps calling me all the time and it freaks me out as I have enough difficulty coping with domestic chores etc. I found the carers were useless when my mother was ill so not very hopeful. Also I worry they might steal - might be more trouble than they are worth. Its just hell on earth it seems
trying to care for a really sick person. We need intelligent robots!
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Rosmarin if you need care in ...you need care in. What I would say is that you need to set parameters from the get go. Don't leave valuables lying around and if you need to, put them all in one room and lock it if it will give you peace of mind. For my own OCD issues that surround care (and I am really not that bad let me tell you - I have a friend who is seriously OCD when compared to my standards and she says her standards are the norm in the care business) I would set down the rules that you want observed...its your home and you are admitting strangers and you too are now of an age considered to 'vulnerable' as am I at 63. SO yes you will be concerned and anyone who can't see that shouldn't be sending in staff either. Just pick carefully and you will be fine.
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You are doing the best that you can do. Take time for yourself if at all possible. I cared for my mother for the past 9 years. She was pretty independent in the beginning, but it went down hill and so did my patience. She passed away last month. I'm 69 and still have a full time career although I mostly worked from home during Mother's last years. This is the hardest thing I've ever done. I regret my short fuse at times, but I'm trying to forgive myself for being human as you should do too. A part-time caregiver near the end was my salvation.
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I lose my temper with my grandma sometimes although I try my best not to. I just apologize to her even though she honestly doesn't seem to have a clue why I'm apologizing and move forward reminding myself to take deep breaths and find a reason to laugh everyday to help. Stress, tiredness and feeling trapped can make a person really cranky. You need an outlet of some kind. After 8 years of no break it's not surprising you are tired and a bit cranky. Caring for a loved one is hard work. Don't let anyone tell you otherwise and you need a break. See if you can find a friend, or a helper. If you can get your mom a caregiver to give you a break in the morning for an hour or so. I have a caregiver come in on the week days for my grandma. They break allows her to take a bath and get dressed, take her morning pills and go to the bathroom leaving me free to do errands, doctor appointments for myself, and pack up a house to move in 3 months. I highly recommend seeing if you can get a caregiver just to give you a few hours off a day. It's amazing what even having quiet time not being asked to go to the bathroom every hour can do for your mind.

Just don't let this ruin yourself. You have to take care of yourself to take care of someone else.
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There's the guilt...and then there's the fear..that I'll be..or am like her..and my brother..who used to let me vent..is silent ..meaning...I don't want to hear it? He lives several hours away..and promised to help me by taking mom for a few weeks..now it seems he's not going to..he has POA and didn't help with the million things I had to do when my stepdad passed away in January..now I don't even have his emotional support..he says..I should go look at other senior living sites..we have an apt at one next week...I have no time to do all that he thinks I should do...and frankly I'm tired of hearing myself complain...but if I don't vent...I may melt down
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I have had meltdowns SheriJean. After the meltdowns I get back on that darn bike. I wish someone would take that bike away from me. I totally agree with Sherry1anne. We are all doing the best we can with the time we've got. Had lunch with dad today (93, independent and worries about everything) then went to see mom at her alz/dem facility for Valentine's day (not that she knew that it was but still wanted to be with her). Now I am with my 2 grandkids that live with us part time (divorced parents). Sometimes I have a pity party and then I move on. Thank goodness for friends that are either going thru this also or at least don't mind me griping. At first I gave up everything to make sure everyone was perfect and being taken care of to my exact specifications. Now, I DO take time for myself even if it's just going to lunch with a friend (and I have gotten better at not going into a long drawn out story of what the last crisis has been when asked.....how are you? :) Try to get some help in every once in a while so you can go get your hair done, grocery store or even Walmart. Don't laugh.....when I lived with my dad after his heart attack, all I wanted to do is go to Walgreens to walk the isles just to get my mind off of things. When I said I was going, he would say ok I will go with you. Don't beat yourself up when you get upset or speak harshly. Apologize and go on even if they don't understand. It will help you feel better. Good luck and God Bless
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I get mad at Mom (94) She repeats and repeats I tell her I just told you that answer,, than she comes back don't yell at me,, Want to change places with me,, I can't leave always worry about her falling,, I go nuts,,, Trip to the food store is a vacation,, God Bless everyone on here it is the hardest job I ever had,,
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Oh bless you probe next time I go to Walmart (not called that in UK) I am going to take my picnic basket and food hamper so I can feel like it a real vacation - I know those feelings well!

I don't even get that luxury now as I shop on line for almost everything, from meds ordered from the GP to disability equipment to moving house to e-vape liquid and before anyone tells me vaping is bad for my health don't waste your energy because I absolutely don't care - it is better than smoking and if it isn't I don't care about that either!!!!!

I can't imagine going for a long walk in the forest alone watching the deer or gathering fossils and shells from the beaches or blackberrying or collecting sloes to make sloe gin once more. I long to be able to go to a PYO farm and PICK MY OWN veg. I long to be able to go and buy whole fish that I gut myself. I long to be able to home freeze food I want to eat not for Mum.

I long to be totally selfish for at least a month and I DONT CARE if people call me on it - it is what I want ....somewhen
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Probe....we can only carry the load for so long...it's so heavy..everyone has a breaking point! That makes us human...you definitely need a break...maybe a local church have folks who can sit with your mom..someone you can be at ease leaving your mom...my mom is so negative..everything I do to help her..she finds that one bad thing that can go wrong...over and over...I finally blow and yell...can't you put a positive thought in front of a negative one..or I just yell...stop it! She then says...you always yell at me..then gets on the phone and tells everyone I yelled at her..which has happened 3 times..even though I spend endless hours helping her...so..it's good to vent...and necessary to get away from it...before you break into pieces! Getting out helps a lot!
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Ohjude...that sounds awesome...a great escape...I imagine in my mind tending the flowers one day..in Gods garden of Eden! Meantime...I'm planning my own hanging baskets for this summer!
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Yes I am with you all! A trip to the store is like a vacation! Very true, I am ordering most things online which is a great help. All these travel ads. ..
dream on ...... Yesterday I got out while a .friend stayed with hubbie( I pay her as she is in need of the money) and helped another friend with her ponies. Marvellous fresh cold wet air! I agree when asked how you are its best to say pretty good ! Otherwise friends will keep away. Vent problems on this site and share with people that know what its like.
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SheriJean- I feel so sorry that you are going through this awful time with your Mom without any support from your brother. why does he have POA? You need specialist advice about this as it seems you are the only relative carrying all the responsibility for your Mom. Yes you sure need to vent or there will be melt down. I know the feeling well. Is there any place where you can get free advice where you live ? Like the citizens advice bureau over here ( UK). From what you say it sounds as if a good senior living site may suit her needs.

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Oh Jude, there is NOTHING WRONG with you DOING THAT! I would think that sometimes EVERYONE needs to just go into the back yard and be alone no matter what is going on at your house. Do NOT beat yourself up about that!
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I dont wise one but yesterday I had some unplanned respite although not quite as much as I imagined. Mum had to go for pre respite assessment 10-4.... well I got over excited and my daughter said lets have a day together....wasn't quite what I planned - I wanted that walk in the forest but hey she is my daughter and we don't have much us time so OK.

So we had it all planned, drop Mum off go out to an antique shop or 5 lunch mooch around the shops with kitchen units in mind - you know what I mean ACTUALLY touching them then off to look at paint and paper and all sorts of nice things.

Well that didn't work.....got to the respite home 2 hour, two hours, YES TWO BLOODY HOURS to fill out paper work I could have completed had I been given it in less than 10 minutes and had they emailed it to me I could have completed it on line and sent it back for them to read through and then just signed it when I got there grrrrrrrr.

Of course by now it was lunch time and they invited us to stay for lunch WTF? So when we said no Mum had a face like a smacked backside and I knew then that it was not going to be the day I hoped for. Oh we had a nice 3 hours together but not enough to DO much and then when we picked Mum up she was a nightmare but hey I am still alive and so is she which is more important or certainly AS important and today is another day!

Oh and although the idiot who told me yesterday that 'you can't live your life on line' won't see this i just want today actually sometimes some people don't have a lot of choice in that!
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Oh Jude -Online is very useful to vent and get helpful answers! Gives the friends a break.
This morning hubby started on about giving cash now to relatives and I am afraid I am getting dire thoughts about it all! He says I might live a long time and they wont get the money for ages and its only a few thousand£ to give them now! well from what I am experiencing its costing a fortune to get help in now.
Rant over!
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