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?
As far as changing clothes is concerned, realistically how dirty do they get? Replace her underwear when she takes them off at night but as far as the rest are concerned as long as they don't smell and not visibly soiled let her be. Put out a clean washcloth identical to the one she has used and screw it up and ;eave in the same place she tossed hers.
Not too much you can do about potential UTIs as long as she is cleaning her self after suing the bathroom. She probably wipes from back to front. Perhaps the family would install a bidet. she might actually enjoy having warm water squirted on her privates.
She obviously does not listen to anyone as you say the family tells it to her like it is. Don't ask her about the laundry just pick it up and do it. Let her rant but don't join in. Just walk away and do the task.
Alternative find another job, there are plenty out there for good caregivers.
My brother's behavior, with me, from day 1 has been a concern. I was told it wouldn't change, worsen if anything. As the disease has progressed it's still unpredictable. I hear, "No," to requests or am ignored. Everything is "Ouch," in helping him. He isn't like a terrible 2 toddler, more like a unruly teenager. I watch 24/7 when I am helping him. Outings alone & me transporting him is a challenge to be avoided.
What do we do with behavior concerns? Most of us keep trying to manage it, remind ourselves of our learnings. Anything can happen quickly, a surprise attack, cause we are trusting still. We must be on guard. We hate the thought of over meds even if suggested by professionals. We hear & know the reality, facilities won't put staff & other patients at risk. I get it, meanies are a concern, no matter the reason.
Try to remember to not respond to verbal outbursts; ignore them, walk away, don't give ammunition. If you are assisting be on your guard, as much as you can, if need be a time out is ok, anything will be waiting for you. You won't win battles.
Caregivers seem to be forgotten about. I know others wonder why we keep on keeping on? That's another topic. Stay safe & take care of you. Blessings 🌸
She got up and got in bed ....
Dorothy, a nurse I worked with 37 years ago, had a patient fall on her. She had back surgery and went back to work. With her very bad luck, she had another patient fall on her and wound up in a wheelchair permanently. I never forgot that.
Hubby had to quit his job last year at the airport, due to two back injuries after lifting heavy luggages. He's overweight and is getting older. I badgered him with Dorothy's story until he gave in and agreed that no job is worth loosing your independence.
Thank you, Blessings4ever, I will have to check into the possibly of recruiting a caregiver from the facility or from a home care agency to go with me. I'm not a kid anymore and have a history of back injuries. The last injury took me two years to recover.
I realized on this trip how frail my mom is. She is not mobile anymore and I wasn't aware of how far she has declined. She has grown too weak for me to be "transporting" her alone. She's 94 and may only have a couple of years left. I'm 60 and possibly have 20+ years left. I'd like to be on my feet through all of them!
We bite off more than we can chew out of love for our family members. We think we're invincible or we "play the odds" or just "hang in there" because there's no one else who can help. We've got to watch out for ourselves so we that we have a future too. I hate setting limits for myself but you can't be an invalid caregiver.
Seriously though there is such a risk of hurting yourselves, especially after a surgery or a back concern. Just putting it out there, but is there not an aide for hire or a professional med team for these treacherous excursions? I really don't think it is healthy or safe to do what all of you are doing, alone. I do commend all of you though! I know we just do, instincts taking over.
As my brother's ALZ has progressed he is, as always, resisting to get up for me more than ever. Yes I know this is the d*** ALZ at work as well. He is not understanding if I reach out my hand to help him, I've tried, down I would go for sure. He also stiffens his legs, so, I am unable to put them on a ottoman or stretch them out on the couch for his comfort. He wants to stay in 1 position 24/7. Keep in mind he is still ambulatory, able to walk, handles stairs & steps. He will get up for others with no problem. He is able to get in & out of his bus that comes everyday, no assistance needed. Me & my car a challenge. I can't help but think is there not behavior issues going on here? Any feedback appreciated!
Just all of you please be careful & stay safe. You & your health matters too. I know we do so much without even thinking, it's got to get done we say. It's ok to think of you! Blessings 🌸
Sue, I totally get you, about the transfers to and from the wheelchair! While my parents did not have Dementia, my Dad did have a very dificult Neurological/Autoimmune disorder, and in the end stages, my Mom had a Cancer that had spread to her pelvic bones, eroding them, and causing her severe pain, especially with every movement. One car, two disabled folks, who both needed the one wheelchair that could fit in the car, Grrrr!
My poor sister had both my folks living in her MIL apartment off of her home, and while they were both fairly healthy and mobile when they moved in, quickly began down the road to total disability.
On a good note, my parents were lovely people, always appreciative and all, nonetheless the frustrations were very real, in taking care of them!
Same sister had a major back surgery, and (like you), was told not to lift, and even though all 5 siblings were often there to help, there were obvious time when she was there alone with them and all that goes out the window when your LO is about to fall, and you think you can prevent it. Needless to say, her back surgery was complete failure, due to her overworking and doing too much lifting, try something she might, it's easier said than done!
We even had COPES Caregivers in, to help with our Dad, and 4 weeks post her surgery, she felt pressured to become a paid COPES worker, as they told her "you are doing the work anyways, you may as well be getting paid for it", a pittance salary, if you can even call it that, but she did it, out of devotion to our parents and their preference to have a family caregiver.
All 6 of us kids chipped in to help a lot, so it wasn't unusual for us to transfer one parent into to building via the wheelchair, and then come back and bring in the other, and then back out in reverse.
So Girl, I hear ya, and understand your frustrations! You hang in there!
:-O
Daughterof1930, I'm so glad you brought up how difficult transporting a dementia patient is, or even just an immobile senior. I've been there, done that and NO ONE but a caregiver understands.
A typical day;
I just took my 94 yr. old (stage 6 Alzheimer's) mom to get her cast off and for a doctor's appt. I just had "female" surgery a few weeks ago and was told not to do any lifting. I already broke that order when, 2 weeks after the surgery, Mom fell and fractured her wrist.
Today I get her in the car. She's complaining that she hasn't had a BM in weeks! Two minutes down the road, "I have to poop." "Sorry Mom, you've got to wait." It's a long drive and she comments about that multiple times. (Like a kid, "Are we there yet?")
We stop for lunch across the street from the doctor. Lifting her in and out of the car is a challenge, standing her up is an even bigger feat. Mother is quite theatrical, so she screams at every little twist and turn. It looks like I'm abusing her but, actually, she gripping my arms so tight that she leaves bruises. I finally maneuver her into the wheelchair and she starts complaining how uncomfortable it is. The pillow is put behind her back. We get a hamburger. I wind up having to cut it in bite sized pieces after her unsuccessful attempts to hold it. I put each bite on a fork. She lifts the fork and eats it but opens her mouth like a baby bird for the french fries. She's finally done and off to the doctor go. When we transfer to the w/c, she's too hot in the sun. I explain that we'll be in the air conditioned medical building in a minute. "Just let me get you in there". Then the questions about her purse...."no mom, we left it at the facility." "Are you sure? I always take my purse with me." "Yes mom, I'm sure." Then she reverts back to, "I'm too hot!!!! I'm going to faint." I try to remember to take my purse and lock the car door and quickly get into the building. "Oh my God, it's freezing in here!!" "Well, you just said you're too hot." "Now I'm freezing." This is said in a loud voice because she's hard of hearing and figures everyone else is too. Everyone is now staring our way. "What are we doing here?" "We're getting your cast cut off, then seeing your doctor." "Can't we just go home?" "No, you want your cast off, don't you?" Mumbling. Two minutes later....repeat above conversation and repeat, repeat, etc.
"I have to go to the bathroom." We go and I have the same difficulty getting her up like from the car. I wipe her and get the Depends back up and her back in the w/c. I'm trying not to strain so as not to undo all the surgery they just did. She can't stand on her own. What my choice?
She's screaming bloody murder when the cast is being cut off, even though there is no pain. I try to calm and reassure, not working. She gripes about it for 5 minutes. I try to distract her by saying she gets to meet her new doctor now. "What do I need to see him for?" "So he will take care of you in the future." "I can't hear what you're saying" (said screaming). "Please lower your voice, I can hear you." "I want to go home!!" We get into the doctor's exam room and she says, "I have to go to the bathroom." "No mom, you just went." "We'll I have to pee this time." "Well, you're going to have to hold it. The doctor will be here in a minute." "I want to go home." Aaaah! Next to the bathroom to pee, repeat transfer scenario.
Finally out of the office and to the pharmacy (fortunately same building). "What are we doing here?" "Picking up a prescription." "Why is it taking so long?" "We just got here, we have to wait our turn." "I want to go home.." I leave her in the w/c 10 ft. away from me while I stand at the counter paying for the medicine. She tries to get up. I drop everything and run to tell her not to move. Then I wheel her right next to me. I got the medicine and back to the car. More blood curdling screaming to get back in the car. My arm is like chopped liver from her nails.
The same 3 questions all the way back to my house. We switched cars so hubby could drive the rest of the way. He leaves her in the car alone while I'm parking my car. OMG, Honey, you CAN'T leave her alone. She'll try to get out." I run over to the car. Fortunately, she's not moving this time. I've got one nerve left. I try to close my eyes in the back seat and relax. She begins saying, "Is SHE back there?" I can't rest. I join in the screaming match called a conversation.
Finally, we're back at the memory care facility. I feel like these people should earn $1000/day for what they have to put up with. I help the aide get mom to the toilet. The aide wants to change her diaper and put pj's on for the evening time. She's having no part of it and starts screaming. I try not to scream back but I'm trying to reason with her in an elevated voice. The aide stays calm. She's finally in her jammies and out at the dinner table. I give her kiss on the head and leave. I collapse in the car and just close my eyes. My first thought is, "Please Lord, DON'T let this happen to me!" We get home and I pour a glass of cabernet and turn on the TV to forget about the last 7 hours. The next thought is, when will this happen again?
Don't you just want to strangle anyone who says that we don't have patience? And how "lucky" we are to still have our parents?
What I have witnessed though, as a caregiver, & it's still puzzling to me, is that those symptoms for each stage jump all over the place, even at different times. So, even though a doctor may tell us our loved one is in a final stage, really it's their expertise & knowledge at work. I don't think even the best of the best have this d*** disease figured out 100%. It's not the same for everyone, not cookie cutter🍪.
My brother, supposedly in the final stage, is still having good & bad days & moments. He may need more assistance, direction & guidance at times. He may get things right, even the dreaded bathroom agendas. He craves attention as well, but always preferred it, his old self an old memory.
Use your own feelings on what you are seeing with your mom, you know best. It sounds like you are doing everything right, making things cozy & easy, the best you can.
You are loving & caring.
Take each day & moment as it comes. Each & everything matters with this "new normal." Take care of you as well. Blessings 🌸
Tough love; Don't talk to him if he doesn't use his hearing aids. Scream that you won't talk to him unless he puts them in.
Any way to get him in a nursing home? Would he qualify for Medicaid? Could you move out?
killing myself working all time,paying for everything. I'm about to turn 55,I think he's gonna outlive me at this rate. He draws SS,that's it.
My mom has Stage 5-6 Alzheimer's. I'm a nurse and have had many dementia patients in my 38 years in the field. You are right, she is not in her right mind but she's "with it" enough to stop talking when I tell her I'm really stressed and I have to leave (step out) if she won't stop talking.
I tried to be patient and understanding but the physical strain/pain right after surgery (which I shouldn't have done but I had no choice) coupled with the constant questioning, makes it an unfortunate situation.
After all, this thread is the question, "What is your screaming point?" Please know, I DON'T scream at her, as none of the others do either. (They scream in closets, garages, etc.) I would prefer NOT to get to the point of NEEDING to scream. If getting up and stepping away for 2 minutes diffuses the situation, all the better.
BlackHole, she had a CT scan as part of her assessment. Everything was normal, just a "goose egg" on the back of her head. Thanks for thinking of that, you're on the ball.
LindaLela,
You need to have someone help you. Call Adult Protective Services for yourself! This sounds like abuse. Call your husbands doctor and see if there would be assistance for placement in a detox center then into assisted living. It sounds like you've come to the end of your rope. God bless you.
But you absolutely need counseling and support and understanding to cope with your mom's behaviour.
The mom you once knew and loved is no longer 'there'. But she's still your mom already. She still loves you even though she can no longer show it.
She no longer has a choice over her actions; she is not herself. But you are still her daughter and you love her anyway.
So forget about screaming, OK? Be patient...
Mother, in another one of her performances, threw herself backwards, stating, "I'm dying!", only this time there wasn't a bed, sofa or chair behind her. She fell on the floor, hit her head and fractured her wrist. I picked her up at the memory care facility and took her to Urgent Care. Had to go to the hospital the next day. She now sports a beautiful green cast.
Now the screaming part. I must have answered the same 5 questions 500+ times in 2 days. She often asked the same question right after she just asked. I dont mind, "How old am I?" because it's an easy answer. But the long answers to the more complex questions, after the 50th time, made me want to scream. Finally, after trying everything else, I told her I would have to leave (so I didn't scream) if she kept talking. I had to get up and stand behind the curtain for a few minutes to show her I meant business. It worked!
Now, when I want to scream, I'll know what to do. Thank God I finally figured something out that works to save MY sanity.