My mother tries my patience on a good day but I usually manage to stay calm....failing that I go to my car or garage and scream
Today is a scream day. Firstly she doesnt want me to go out this afternoon for something I have had planned for 6 months. I will be out 90 minutes and providing she goes to the toilet before I go and they lays on the bed no harm can come to her.
So 10 minutes after me reminding her we were having lunch at lunchtime she decided to soil herself royally, followed by the words you cant go out if I am like this all day. Now if she hadnt added those words they would have come to me all on my own but BECAUSE she added them I started to wonder.
Then she said she felt sick and didnt want any lunch - but when I came in very quietly (OK yes I was spying) there she is stuffing her face with biscuits and cake which I leave by her side. She has been awake just over 4 hours and I have been in to speak to her chat wash clean her soiling clean the room 14 times which I think is pushing your luck really.
So what has she just done? Asked for coffee so I made her a latte just as she likes it and she now wants sugar in it - has NEVER taken sugar in anything. Then there was too much coffee in the cup - its dispensed mum it is always that amount.....well its too much Ive always thought so
I could see her fidgeting so I said lets get you across to the commode mum. I dont need to go there ...well I think you do... wasnt gonna happen. I came back in 5 minutes later and despite her reluctance I got her up and here we go again she wet and soiled herself in front of me. You wont be able to go out this afternoon you'll have to ring and cancel.
As I count 1 to 10 and find it needs to be 100000000000 I count to now.
Hmmmm OK lets try my theory. I went out of the room and 'made' a phone call. I know she could hear what I was saying because I was stood right by the door and I spoke louder than usual. When I finished my call, I waited a while then went back in. And what did she say. I feel much better now you could have gone after all
I havent told her yet but I havent cancelled I spoke to the phone not to anyone the other end so at 5pm I AM GOING OUT SCREEEEEEEEEEEEEEEEEEEAAAAAAAAAAAAAAAM
Whats your screaming point?
Christian My mother doesn't bloody answer me so I don't know whether she has heard me or not so I say it again louder. Then louder still Then shout. then she says don't go on at me!!!!!
Babalou we are moving really because it is more beneficial for me to not have the worries about the steps in the house we are in PLUS she can't get out without going through 3 doors which is a bonus, not that she does wander - she can't walk well enough to but just in case. Plus it has a much bigger bathroom which will be handy
careisgiving - sadly I don't drink but I have thought about it a few times recently
Alexander don't be sad give them a ring and say oi get your backsides over here and give me a break or I will bring him to you and just leave him on the doorstep
Jessie don't say that about raised blood pressure - mine will be through the roof after today. She is snarky as hell at the moment and nothing is right so she is ignoring me, refusing to eat anything I make. Daughter comes over and bingo 'SHOWTIME' she was charming and ate and drank and p155ed me right off
Oh to be in Arizona - at least it would be warm .... mind you then she who must be obeyed would say it was too hot!
1. The not gross but scary (how the hell did she manage that??) thing. This morning woke up 3.30 am ( me ) Stumble thru the house , put coffee on, heading for my usual make sure she's breathing check. Hum spare room door open and light on.. that's weird, but Im sleepy. Into her room I go.. her hospital bed is flat, blankets on the floor, oh except the one she is laying on and wide awake MIL. I pick up blankets, ask her if she got up in the night, nope of course not. Before I can think to stop myself I state well you must have with the blanket under you ( Oh NO My head says to me you didnt actually say that did you)... No you put me on it last night , now alert I carefully keep my mouth closed... Okay lets change britches.. little accident, clean her up go to put dirty britches in the trash notice bathroom door is open, toliet is open, poo in said toliet.... But no she didn't get out of the bed.
My rant for this one is how the hell is she able to do all of this in the middle of the night when she can barely move from the bed to her wheelchair any other time??? Demetia gives her super Grannie powers!
Okay rant 2. This is the gross one.. For some reason Demetia has told her that the only way to poo is to digger it out with her hands.. Sneaky like. If we are in the room she has no issues but walk around the corner and hand up the butt... That one drives me insane, but what can you do other than watch her like a hawk..
Sorry this was so long.
To not end on a bad note, they make me spend a lot of time in the doctor's office. Even if we go there twice in one week, grandma always walks into the office using her walker with a smile saying to everyone (she has gone there 30 minutes so it's still a familiar place), "I haven't seen you in so long!" I had her in the doctor's office Monday and now today with the same UTI and drug reaction issues and she still greeted the doctor, "Hi. I haven't seen you in forever." That always makes me laugh and smile.
It is great that you have been going to support groups and that you have come here, there are so many that understand because they are either current caregivers or have been or their roles have evolved to other sorts of care.
My Mom was a poo-digger when she felt she was constipated (which was often, even when she really wasn't). When it was clear we couldn't stop her from digging, my sister, a CNA, gave her a box surgeon's gloves to use when she "had to" dig. Mom refused to use the gloves - Dad kept telling her.....Anyway, she apparently scratched herself while digging (fingernails) just inside the rectum and it caused a colon infection. The infection spread (eventually to her heart) & caused her to die.
Poo digging is very common I think. Mum does it a lot and like yours worried she has sharp talons. Then she said I have haemorrhoids they are bleeding - erm no mum that would be you tearing the skin......then utter refusal to believe she has done this and I am in the wrong again!.
Oh and worried when Mum had a UUTI she was put in a hospital bed with side bars and she climbed over them, she punched the doctor in the face and I don't want to even mention the words she called the poor black agency nurse who was charged with making sure she didn't get out of bed. I had to apologise over and over again to him bless him
and yeah we did ALOT of apologising to the very nice black orderly as she didnt want one of those Not gonna say the word/ words around her.
My screaming point would come if the patient is abusive and nasty and refuses to do what she/he should be doing or repeats the same questions and idiotic actions over and over again no matter what you do. I simply cannot and will not put up with this nonsense. I can't - My fuse has gotten too short over time.
If you feel like this then either you possibly havent understood something or I have misunderstood something. My Mum is certainly abusive she doesnt always refuse to do what I ask but she sure as heck can be non compliant over certain issues. However its the next bit I find I have to comment on
Some people with dementia will repeat things until you want to scream. Some behaviour DOES appear very very odd but please not idiotic. It might seem like nonsense to you but in their world it has meaning. Each dementia has its own straining points for its carers. I dont think there are many of us who can truly say they havent ever felt that strain. I use the garage when it all gets too much so people know I am not screaming at Mum but at the situation.
And this next bit really got to me
No one should put up with this after all attempts to do the right thing fail. If you have done all the right things YOU HAVE NOT FAILED.
In cases like this, there can never be a GUILT trip.
I dont agree with this bit either but that is because I live in the FOG right now and I shouldnt
You have to think of yourself first - you owe it to yourself. And this last bit is so absolutely right - sadly not all of us can get our heads out of our backside to see it (speaking for me alone here)
I've gone back to school full time and as a condition of that, she has to do the dishes, the laundry, and some of the housework; turn the TV off when it's study time, have supper ready when I come home, and open the door. (If she doesn't shuffle down those four steps to the door, she doesn't get any other exercise.) But the hamper is overflowing and smelly; I continually find dirty dishes in the cupboard; she refuses to follow recipes or instructions, plainly written on packages (and she claims to be a caterer) and on it goes. I was offered to be the evening lab monitor, so my classmates could stay late and finish assignments (and I would earn brownie points for the work/study term later this year); when I brought it up to Mom she blew up at me and I had to decline.
Mom refuses to leave the house except for doctor's appointments, and refuses all help except me. She will not sit up straight or stand up straight, she leans on everything when she walks. We argue every bloody day about my schedule, which is posted plainly on the fridge -- we were told to do this in the orientation, adding in study time, time for chores, personal time, etc. which she agrees to when I print it out every week, yet every day she expects me to come home before classes are over and keep doing *all* the housework, *all* the errands, and my homework, no time for myself. (I budget one social outing a week.)
And now I have to give up a daytrip to Vermont, that I've been looking forward to for months, because the idiot hospital has *finally* scheduled her first cataract surgery this week -- two months late! In order not to get kicked out of school, I need a doctor's note with all the days I expect to be absent helping mom. (You miss one day, you miss a lot of content and quizzes for marks, and the teachers will not pause to fill you in.) And let's hope the second surgery is not during finals week for the semester.
My screaming point was taking mom to the Ambulatory/Urgent Care Centre (a cross between a walk-in clinic and Emergency Department). She developed a severe viral eye infection that has been resistant to two different types of drops. So I was instructed to take her to the hospital, where they would have the facilities to look behind the eye and authorization for referrals. It has been ongoing stress for the last three weeks, trying to get her to the walk-in clinic and agreeing to have the doctor from Med Visit come out to see her.
On Saturday I told her if she wouldn’t get her eye checked out, I would not buy the groceries. We got there about 10:30 a.m., and she was constantly impatient, angry, loud and belligerent. Never again, if she’d have known I was taking her here she never would have come, I really like doing this to her, she’s had the problem all her life and they haven’t been able to cure it (getting mixed up with her diseased ear).
A bit of comic relief for you all: you know you are reaching burnout when you accompany your loved one to a public place such as a hospital and do not realize you have been wearing your sweater inside out until you take it off at night. Now I know why the patients were reassuring me that they understood that mom couldn't help it and no need to apologize.
The first doctor was more affable and accommodating. He told me mom has a lesion (I believe on the iris) and pointed it out to me on the instrument (which I couldn’t pick out but it was very nice of him to do so). He diagnosed a severe viral infection, said he would refer us to the ophthalmologist and instructed us to wait outside. So I thought great, we can go home soon – not! We had to return and go through the same registration process three hours later. Mom is about to blow a gasket, I must have come across like the wicked [caregiver] of the West (an image reinforced by a large bruise on mom’s head which she acquired earlier during the week when she bumped into God knows what), and the poor patrons of the Tim Horton’s cafeteria had to bear the brunt of it.
The specialist was rough and more impatient, and for all my resentment and irritability at mom’s attitudes/behaviours and answering the same questions over and over and over again, I did feel like the subject in the psychology experiment where they were told to administer electric shocks. The eye drops stung, her head hurt from pushing it forward onto the machine so the doctor could look into her eye, and he was just generally rough and curt with her.
He prescribed an antiviral drop to be administered every two hours, even throughout the night (good luck on that one; not happening); and wanted to see her again on Monday at 8:30 a.m. That would be impossible because I work part time, couldn’t take off work and barely make any money as it is. I did have to laugh to myself, though, because mom was so confused about where she was (England, Newfoundland, Toronto). She was anxious to get out of there and had no intention of coming back again, and told the doctor she was going back to England. He asked me when she was flying, lol, so I enlightened him.
So filling the prescription should have been the easy part, right? Wrong! My regular pharmacist didn’t have it so they called different locations and even different drug stores – none of them had it in stock. So I had to order it and didn’t start the medication until late Sunday afternoon. Wouldn’t you know, the clinic called me when I returned from my first shift, asking why I missed the appointment. I explained the circumstances and she asked when I could come in. How about the March break, I asked. “Let me see what I can do,” and she put me on hold. “How about tomorrow at 12:30?” Obviously March break was out of the question so I said okay. I figured I would skip the second shift as none of the children come home for lunch any more, and hope I’m not found out. I’ll already lose a week’s pay during the March break.
I get back from my morning shift, do a few things, get mom ready and call a taxi. The receptionist didn’t tell me to check in at a different area so I wasted time at the Urgent Care section. While I was waiting I realized that in the rush I left my wallet with mom’s health card behind, so the volunteer said not to worry, just as long as she had two pieces of I.D. Redirected to the eye clinic, where there was a stream of patients waiting for their number to be picked. All the while being lambasted by mom for bringing her here and wasting her time. By then it was 12:30 – the time of the appointment - and I had recently remembered I was expecting an important phone call at 1:30. I am so exasperated and stressed out by this time that I decided I was way too late for the appointment, I would miss my call, I wouldn’t get to my last shift on time and mom was as angry as ever for being there. So I ordered a taxi to take us home - $40 wasted on transportation, a missed shift and no follow-up to see if the treatment is working, which by the looks of it, still hasn’t made a dent in the infection. If you hear a jungle call that sounds like Tarzan, it’s me.
Another screaming point is those long stories about her relatives I never met. They have old country names. We never associated with family on either side, so the names don't mean anything. But she'll tell me all the things Aunt Ocee did or about Cousin Gorwyn and Uncle Albert, who had 14 children. She tells me how they came by always at lunch in the Depression years and ate their food, so they would only have biscuits for breakfast the next day. I don't think they ever did anything exciting, except my grandfather who got his eye shot out and cheated on my grandmother.
The names are what get me. Some of them sound like names straight out of Deliverance. I bet they would have been a lot more colorful if I really knew them. She paints scenes so that bluebirds and butterflies flutter around the people who are eating all their food.