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No Jude, SOMEONE has to teach her a lesson. I really hate it when people give me caregiving advice and they have no experience to back it up. Textbook knowledge is fine as a beginner. But, I think - hands on experience is needed. Not everything is black and white (per my therapist...I'm still working on it.) Drag her in, and You flee so that she has to handle the situation. Hands On Experience. {{chuckling... 'wouldn't answer the bloody door'...}}
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Dear god book no - if she came to my house I wouldnt answer the bloody door
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If I had the gumption, I would have told the social worker, "Well, there's only one of me to do everything. I do talk to her when I can. Since it's not a lot to ask, why don't you drop by daily, just for 10 minutes of your time, every day, and have quality conversation with my mom? This will give me an extra 10 minutes to do more chores." Watch her quickly back pedal or throw it back at you.
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Absolutely Veronica and I fully intend to stay that way :)

I WILL have the best care I can get for my Mum. Does she deserve it - probably not - but she will get it because I will not allow the professionals who have NEVER done full time 1 on 1 care to a) tell me what to do and b) tell me I must do it.

Now the nurse who is coming out has done care work (so she will have an idea) but even she says that 1 to 1 familial care is very different from nursing home care because of the ties that bind us to our parents. Even if we dont like them much we still love them and care about their well being so when your mum says to you for the umpteenth time please give me enough pills so I can just leave this world it still bloody hurts.

However the nurse quite honestly told me that when you hear that from 6 or 7 people every night you learn to handle it and distance yourself from it which is nigh on impossible in a familial setting.

The social worker said if you sat and talked with her more often then she would be happier - it's what she wants and it's not a lot to ask.....well yes so it might be but once again I am clearly NOT in that equation and that's what rattles my cage and
YES IT IS A LOT TO BLOODY ASK - well it is for me. It's not that I don't sit and talk to her - I spent more than 4 hours doing that yesterday - PLUS meal times massage, toileting, bathing, while I was cleaning and dusting etc but to do more than 4 hours? NO WAY can't do it sorry well not sorry actually I need a life too
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Jude you must be the worst nightmare for every healthcare provider within 50 .
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College you are doing all the right things. Let the Dr know before he sees mom what you are anxious about and mention hospice. you can write a list and hand it in an envelope to the nurse. If Mom is aware enough to want to know what it is. just tell her if is a list of medications to save time. have them do a full exam including her tail bone. It can be done with her turned on her back and covered with the sheet. If they can't get a clean specimen then request a catheter. What you are doing to clean her potty sounds adequate to collect a clean specimen and just as clean if not better than a "Hat" i don't believe they are sterile. Have hospice come in to do an evaluation and they will decide if she is ready. many people do set a goal like the arrival of a new baby and to everyone's surprise many do make it.
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Jude, I'm sorry, you are hilarious :D

College, I hope that your mother starts doing better; that they find out what is the problem and are able to take care of it; and that she makes it to her 95th birthday. You sound like such a loving, caring daughter; I hope you are able to get the rest you need, and I hope you are surrounded by family members and/or friends who build you up and help you however they can. God bless :)
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College let me add a phrase. You may see a doormat but this one does not have welcome on it. Mind you I wasn't very good with the social worker who rang today. I had planned to be polite - didn't last more than 2 seconds I reckon. It started well I said good morning! When she started offering advice on things that were clearly beyond her scope - done the research.... found the scope of their work and its not as broad as they would have you believe in UK... I sort of lost it.
I did raise my voice...I said 'if I had wanted advice I would have asked someone who knew what they were talking about'....the conversation was very short!
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college I can sympathise except my mother was in a nursing home, i do not want to scare you early if you do not have hospice please contact them, my mother had all those same problems get worse the week she died. Especially if your Mom being 95. My mother was 85. They pick their time, she may be holding out for her birthday as mine did she made it two weeks past her 85th birthday. But, the quality of life diminishes one they stop eating. I must admit it happened a couple times in the 8months she was sick, then would not eat then having a gagging problem and then she ate good for awhile when she overcame her fear of eating, it seems it happened at various stages she entered into of her decline. Best of wishes that you have a better ending, but I would prepare yourself for the near future.
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Well today is Dad's one year anniversary of Residing at AL. His Alz is slowly progressing more so since April.
I took him out to lunch today-his usual burger, fries and a beer.
Then he had a ride which I arranged in a T-bucket hot rod as there is a convention later this week and a FB friend from Texas was attending.
I'm still doing outings while he still is mobile as there will come a time when these will end.
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College, let me add a useful phrase: "I can't possibly do that". It comes in handy when officious types try to get you to do things their way. "How can we make this work for my elderly parent who has dementia" is another.
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Love you all thank you for info. Today will be a busy day and heads will roll. Talk to you all later, hugs
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You all should google "family caregiver platform project". It is an effort to get out legislators to understand caregiver issues, the money they save our country by providing free or low cost care, delaying and sometimes eliminating the need for Medicaid in the future at the cost of our futures, financial, emotional and careers.
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And if not a cath, ask for a "hat" a plastic bowl designed to sit on the rim of the toilet, beneath the seat, then pour into the container. I do not think it is the doc's rules that have changed, probably, insurance as we see changes like that as well.
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My mom had frequent UTI's. The only way we were able to get a clean sample was with a catheter. I finally started doing that after three contaminated samples in a row. Too hard to try to keep them clean, to say nothing of getting them to understand what they are supposed to do. Some doctor's offices will do the cath, all er's should. Just tell them that is the way it has to be.
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Take her to the doctor or the ER. Is your mom on Oxygen? Make sure she gets her oxygen level checked. Your mom has several symptoms that my mom had. The coughing with the acid reflux, no appetite. Does she sleep propped up with a bed wedge or a pillow to help with the reflux?
Good luck.
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My turn to vent. My poor Momma has a UTI. I can tell because of her behavior. It was really hurting her so I called the doctor Saturday and he called in nitrofurantoin 100 mg 1 every 12 hrs for 5 days. I am suppose to take urine sample in the way I have always done it. Well now they changed all the rules. It has to be their bottle. That made me mad. They wanted me to go home and make her pee in the bottle. She has some dementia and can not understand how to do this. I always have to keep her potty clean and get it that way. But she poops a lot and it will be a while before I can get a good sample. This is the way the did it in the ER. So when I need to get a sample I clean her potty with bleach and wash it with soap and water. rinse again and again and dry it and wait. They do not understand how hard this is. I also put it into the refrigerator with cover on it in a plastic bag. Also Mommy is not eating much again. Her acid refux is bad she coughs all the time. She falls asleep talking to me. Her breathing is different, very weak and ever since she fell in May she says her tailbone hurts. At least once a week she says this. She has a funny smell too. She doesn't want me to tell the doctor anything. I think her old cyst on her tailbone is acting up again and she tries to hide it from me. But I see a small stain of blood almost everyday in her depends. She said hemorrhoids. She says its her leg that hurts from arthritis. I'm talking to you all trying to get brave and take her to the doctor tomorrow no matter what she says. She wants to live til February because my daughter is having a baby on her birthday the 2nd she will be 95. Maybe it is time for hospice? tears & hugs
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It is difficult to understand how we can go on and on being caregivers in a situation that seems like it has no end. We can love our partners, mothers, dads etc., but we are giving our very precious lives and time that we will never get back. I personally must not dwell on that thought or I would get depressed. I know he would be miserable in a care home and I would miss him, so result, I go on caring for him and doing my best. So far no dirty diapers to clean or change. When that happens, I just don't know how I will react. I have all the compassion possible for all of you who are doing this job. Many relatives must think that things just get done magically and never think about us who are doing the "things" that need to be done. They go on with their lives as though we are nobodys. It is sad.
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Man, all this stuff going on. I can hardly keep up. I'll remember all of you in my prayers. It can be so, so hard. And I feel like I'm just a rookie here, since I get the second half of my weekdays, and the full weekend, at home with my family, while most of you are full time caregivers. Some of the things you all have to deal with is mindblowing; I can't pretend to know exactly what it's all like, though I've had to deal with a few things, but I do know that it's hard, and want you to know that you all, each and every one, have my sympathy. And I feel very glad for those of you who at least have someone with a sweet personality to care for :D
It'll be back on the battlefield tomorrow morning for me; we'll see how that goes!
All of you get the rest and relaxation you need tonight!
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Stacey you get in whoever you need to hun if he can afford it. Why on gods green earth would anyone CHOOSE to clean if they didnt have to. So he pays 1000 a month and what would he pay in a care home? or an ALF? That's rent sweetheart its not a hotel fee and there is a difference.

On the proactive side get him a walking trolley so he can put his meal on the trolley and then wheel it in - it's saved a million spills in our house although this week mum is really too weak to do much at all
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How am I today? My mom is dehydrated and I am having problems getting her to drink anything. She has aspiration problems so every time I give her something to drink I am anxious. The only thing keeping her going is Ensure Plus, juices, and occasionally water. I am in my middle fifties and I believe this stress is going to kill me. I can't seem to be calm anymore. If I could, since I have been caring for my mom since she had an aneurism in 1995, I would place her in a nursing home but can't afford it. I still have a job and I can't afford to just quit after working 29 years. No one is going to support me. I am not married and I have no children. I have to admit that even though I have had many set backs and my own health scares, I have never felt so hopeless in my entire life.
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Hang in there Stacey, I cleaned the first hall accident of the #2 variety during physical therapy about two weeks ago. My daughter was extra clingy yesterday, so my husband had to tend to the mess in his dad's room, he lost a few body functions before the ambulance arrived. He got most of it up, but I know I will have to do the rest most likely. I feel for you and can relate with the bathroom! I have to remind myself to get in there and clean, as I hardly go, except to collect his laundry and go omg, I have to clean this place.

As far as the independence, my FIL is just the opposite. He wants to be waited on, we bring him everything. We try to encourage him when he was doing better to get things himself but it wasn't working. He couldn't even crack his own crab legs the other night. My husband offered to do it for him, but he decided to eat something else.
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OK, im back, I HATE cleaning a man's bathroom! Do you think it's wrong to get maid service to clean his (FIL'S) wing, bedroom, TV room and his bathroom, and charge him for the services? I have severe knee Arthritis, and it's all just becoming too much! Hubby has really bad back issues too, and he just doesnt ever do it to my liking anyways as the bathroom is the main in our home, and the one guests use while visiting. Mind you he does pay us 1000 a month to live with us, pretty generous, seeing some other comments on the blogs, many others get nothing at all, so, am I being petty, I just think it's gross the longer I do this endless, thankless, frigging care! Frustrated in Seattle!
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Sorry I'm unable to spell check, as I can't see the little box when I'm typing, forgive my errors! Stacet B
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I want to start off with a BIG THANK YOU TO YOU ALL, then dive into my rants, Ugh! Im so frustrated with my FIL! We just biught a carpet cleaner a couple of weeks ago, did the entire house, all carpeted, in one weekend, and they turned out beautiful! Bu my FIL, insists on carrying his food from the kitchen to his TV room, even though we Alway state we want to do this as he has become such a fall risk in the past 6 mo. But, No, ornery cuss that he is, he tripped and fell while carrying microwave Mac &Cheese, yes that extra orange muck! Wel, after getting him up off the floor, and assessing any bodily damages, none, had to scrape the muck of of cleaned carpet walld and doors, plus help him to change his clothes and mine. ? It is nt the first time either, he just won't give in to us helping him, and its so frustrating! Im forever telling him to use hus walker. But he won't be bothered, so he has fallen 3 times in 5 days. I've gone so far as to tell him that one day he will break his hip or shoulder, he's 85, abd Will end up with surgery, and then go to NURSING HOME, his Biggest fear, but nothing penitrates his thick skull! Sorry but is this Man thing?, as my Dad used to be obstinate like this to8, maybe he doesn't like taking suggestions from a young (55) girl like me. He's only been with us for 11 years now, and we only have his best interest at heart. OK, I'm done ranting now, and I do feel better! I hope you are all having a Stress free day! I'm off to steam clean carpets again, here in Sunny Seattle, supposed to get up to 95' today, Ugh!
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Cam, it's so obvious a shock. Unfortunately, when we're in the trenches of caregiving, time seems so slow..because we're too busy dealing with the hour-by-hour caregiving, worrying about the bills, very exhausted and trying to get family to help out. It never fails to surprise me how time flies by and I didn't even notice it. I remembered last year that a friend told me that an acquaintance died of cancer. I was shocked (because another person I know has died to cancer.) and recalled she had lots of kids. I felt guilty that I didn't meet her again before she died. So sorry.
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CM keep the faith you are doing awesome considering all the things you have been and are going through. Next time Drd says "are you depressed Mum?" just give her a slap up the side of the head.
Sudden death especially shocking of someone you know. You really feel the loss if they died from something you are or have been closely involved with in this case dementia and the ffect it has on the family
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He was such a sweet man. Such a lovely man. And he must have been 55 at most - I can remember his telling me that if he 'hadn't made it by 30' he'd consider himself a failure. And I said "and what are you going to do then, jump off a bridge?" But he wasn't a failure, or at least every time he did fail he picked himself up and bounced straight back. He once got punched in the eye by a bouncer after an office party - I wasn't there, too busy with kids, but it became a legend in the firm purely because he was the least tough guy you could possibly imagine, and everyone was too astounded by his squaring up to this big bully to hold him back.

I can't believe he's gone. He was also the one who told me to stop worrying about how untidy my house was because "we don't love you for your dusting." And when I had to leave my job he wrote in the card "life will be a bowl of toenails without you." Which was not true, because I was probably the most challenging and insubordinate employee he'd ever met, let alone hired, but he was very loyal and very kind.

And of course now I can't remember when I last spoke to him, but it wasn't above two years because I asked him to take my little girl out to lunch and give her the "So You Want To Be A Headhunter?" talk. Only of course it was above two years. More like four. The time warp of caregiving, I'd forgotten.
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CM, what a shock I know how it feels to find out that someone has passed and not being aware they were even sick. I found out about my boss a number of years ago. He developed pancreatic cancer and was gone within months of the diagnosis.

It is strange though reading this news of yours, has impacted me more than I could imagine. I am trying to figure out why. Probably has to do with the early onset dementia. This wretched disease should be reserved for the elderly. Taking someone young makes dementia an even more cruel disease.
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I was going to whine on the whine thread, but I can't because Shilo's mother has just died and on the scale of things…

But how I am doing today is just horrible. I looked up my old boss's firm to check his contact details so I could cadge a reference from him and discovered that he died in March, of early onset Alzheimer's. I am stunned. I had no idea he was ill, it must have been incredibly rapid. Or am I so out of touch? And early onset Alzheimer's? What??? I feel like God is sitting up there watching my every move and going "HA-ha-ha! - not this time sister. Are we learning anything yet?" Only I don't know what the lesson is I'm supposed to be learning. That everything I touch turns to sh*t?
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