What is your screaming point?

My mother continually calls, I need you, I need you, I'm sick, I'm sick." What do you need? "I just need you" . Later she will be sitting in her recliner in the dining room and if she lifts her head she can see me working in the kitchen. She will start calling again, "I need you" She refuses to look up. "where are you. I need you" What do you need? "I need a thing to blow my nose" There is a box of kleenex right next to her!!!!

Oh my mothers got a bell and I swear one of these days she will ding every time she has a poop!

We made it to Mother's Day Breakfast, now waiting for my brother. She is asking questions and is mad if I have the wrong answer, walking around looking for her brother. On a good note she ate really well, I'm doing my best but falling short I think.

My scream point is when mom keeps asking if I have seen or heard from my brother. NO I HAVE NOT!!! He lives around the corner from me and about a mile from mom but he never visits or calls. The last time mom called him, he tried to change his voice and said she had the wrong number. He also will not answer the door if she tries to visit him. No matter hard I try to help her, she always want my brother. It makes me want to scream!

Feel for you, Sherridene. Except I had two brothers. One I was fuming about, because he was POA and bloody well should have called and never had. The other I was just baffled - had I spoken to him? Well, no, not really, haven't much since 1978. Why do you ask..?

But to go back a bit - your brother actually hides away when she knocks at the door??? What's his problem?

Countrymouse, my mothers health has seriously declined in the past year and we almost lost her this January due to respiratory failure. My brother has said that he does not like to see her sick so he just avoids her. Of course he doesn't mind her paying his car, truck and motorcycle insurance and tags. He is also on moms checking account but so far has not used any of the money. Some family members are just jerks and nothing we can do will change them. He didn't used to be this way.

You must want to give him such a slap, don't you? Like you just love seeing her sick and fading… Phewf. If you get a chance to give him a piece of your mind, take it with both hands.

That is one problem I dont have - I have a brother but an injunction preventing him coming near Mum makes life a whole lot easier. If he got through the door I would have no hesitation in chucking him back out and he would get much more than a piece of my mind the vile creature.

Hello,

Caregiving is indeed stressful, hopefully the information I am sharing can help! I am volunteering as a summer Intern in the Boston headquarters office of Road Scholar, a wonderful non-profit for older adults interested in lifelong learning and travel. I am working with the Impact Grant Committee to review and award financial assistance applications for Road Scholar’s educational travel programs, including a new grant just for Caregivers. The grant will help you offset the cost of substitute respite care to attend a Road Scholar program and experience learning adventures that can provide a much-needed rest from the emotional and physical demands of your caregiver service. While volunteering here at Road Scholar, I’ve learned about the healthy benefits of lifelong learning and the camaraderie of group educational travel. I think these health benefits are especially important to caregivers so I’m helping get the word out about this unique respite opportunity. You can find more information and apply here: If you send in an application before the end of the summer, I’ll probably be reviewing it so I wish you the best!  -Shoshana

Shoshana I am in the UK so it wont affect me BUT is there any funding for caregivers who want to learn how to care better? I know so many of us do what we do and of course we know nothing yet we know more - if that sounds daft ask anyone in here what their experience of doctors not listening to them when they know their loved one is poorly. That said many of us don't know how to do some stuff that we will need later on - bed bathing for example - rolling people safely, transitioning between a and b, understanding the effects and side effects of polypharmacy, managing meds and returns of meds to pharmacies etc. If that was on offer and I lived in US you couldn't stop me from going. It sure as h*ll isnt over here and we need that sort of support too. I have trained loads of carer professionally in some aspects of general caregiving so I know the role play for this type of thing can be hilariously good fun, a means to bond with other caregivers as well as learning at the same time

Hi JudeAH53,
I checked and we do have programming in nearly every country, non-US residents are more than welcome to participate in nearly any program, but unfortunately they are not eligible for grants. Our programs focus more on lifelong academic and hands-on learning. However, we do have a strong online community with the Road Scholar Institute Network (roadscholar/n/institute-network-benefits) and our Lifelong Learning Institute (roadscholar/n/institute-network-why-join). Although these are more geared to participants in the states, everyone is welcome to join our pursuit of education from the comfort of their own home. I hope this helps. Best to you.

My screaming point is when mom repeatedly reminds me I have to go for the groceries; I reinforce it with a note saying where I'm going and what time I'll be back; then come home to her tirade (and sometimes a chained door) about how I've been gone since 9:00 this morning and didn't even tell me where I was going; she's going to see if she can stay with someone or find a home, etc. (she blasts me upon returning from just about anywhere I have to go). I react and argue with her, asking her where the note is, telling her when I actually did go out. Lately I tell her straight that I am not putting up with her anger/behavior and threaten to go to a coffee shop or a walk until she calms down. Then she turns all teary and saying she's losing her mind (she really does not remember but tends to call me a liar); she has to go see the doctor to find out what's happening. This seems to hit the reset button until the next time, when it starts all over again.

I had respite care come in but she didn't want them to stay, it was far more stress on me and the relief worker. Now she's wondering why they don't come and visit her, so I'm checking out an organization that offers friendly visiting instead.

I realize intellectually that it's the disease (although I believe there are elements of life history, personality and control issues); however, I can't seem to rise above it and be proactive rather than reactive. Any ideas/insights would be most welcome.

A good scream in the garage helps! yes youre right it is the disease but our specialist told me this whatever traits your mum had before she got dementia will in all probability be exaggerated BY the dementia and this does seem to hold in my case.

The good times are over sweet and quite frankly sickly, the constant nagging is much worse and the denigrating of me is much more frequent. That said being proactive wont help in the slightest. You can write all the notes you want, you can invite all the sitters you want but if she doesnt want you to leave the house it will still be your fault hun - sorry.

So what can you do? Well I try to keep mum to a tight schedule - pretty much like you would a baby. It seems to give her some realisation about the day. She is much more easy to control if I take her out in the car and I do take her shopping but only if I KNOW there will be a wheelchair trolley waiting for me when I get there.

She goes to a church guild meeting every week its probably the best 2 hours of my week so perhaps there is a day centre near you she could go to? Or does your church offer any support that she might take advantage of - she may know them already so it wouln't be so traumatic for her .....hope that helps hun xx

Globetrotter50 - A highly regular schedule is really important for dementia patients. Mom needs to be in an unchanging daily routine. Even "small" changes like coming & going sound like they are disruptive to her.

She may benefit from anxiety medication to take the edge off. Please talk to her doctor about this. Her emotional control will not improve. It becomes less and less.

You cannot rise above dementia. It's going to get worse and worse, not better.
My mother spent a short time in my home to wait until her senior apartment was ready. She was beyond difficult, paranoid, angry, controlling, pouty, sulky, rude, abusive, and had hallucinations & delusions. Mom had mental illness before dementia, and dementia didn't help any. Her wildness scared my kids and made everybody dread and avoid being in the house with her. We were miserable.

We simply cannot live together. This is not a reasonable caregiving setup for the two of us. It's a good thing we got her into the facility when we did. Mom had some major incidents that I am thankful every day did not occur in my home. Now she is in the secure memory care unit. She has people that keep her on a schedule, get her clean, fed, medicated, and occupied.

When we visit, we visit as family, not employees, not slaves, not as children, and we can come & go at will. This is not possible in your own home. If she's having a bad time, we can step out. My personal stress level has been cut way, way, way down having mom in a safe place where she gets the best care she's ever had in her life. Her psychiatrist visits her there, and the psychiatric nurses on mom's unit are very attuned to her struggles and always keep me in the loop and explain what our choices are for her care. In my home and in her own home, mom was not getting any mental health care whatsoever.

Right Now! Mom asked me to get home insurance quotes so she could save money. Have personality disorder brother that lives with her. He has to approve anything she spends money on like a new stove or home insurance. Mom has always let him run her life. She is 89 now and on a walker. I have made lots of calls over two week period. Mom or brother keeps telling me more things to ask about each policy. Mom is very hard of hearing and hearing aid won't work with phone. So fine I tried. Today, I said that is it. No more phone calls. She calls me back two more times. Who did you talk to at this particular company. I tell her I don't know you can talk to anyone. She says she has hard time hearing what the recording is saying. Press one for this or that etc. I repeat that I don't want to make anymore phone calls. I've made a whole lot. She says she will try. Sounding helpless as she says it. It is not a trick. She is not trying to guilt me into calling for her. But I still feel a little guilty. But I am sick, sick, sick, of how complicated just getting some quotes turned out to be. The company didn't make it hard. Mom and brother did. Now I feel like it is my fault if she ends up with no insurance. Suppose she doesn't get new insurance. And then doesn't renew the insurance with the company she is with now? I am so sick of this and everything else to do with her problems.

Barbara

Shelly while I respect your right to speak out I cannot agree with you. When I had my children I CHOSE to have them - I didnt have them with a view to them looking after me later in life... in fact I have an advanced directive that prevents them from doing so.

I never smacked my children for having accidents but I was smacked as a child for them I can remember it very very well.

My mother did always has and always will berate me for not being good enough to anyone who cares to listen whether she knows them or not.

My mother has incontravertably (the psych's words not mind) got mixed dementia and she is not sedated at all hence me being up most nights with her. Yes her dementia is the thing I hate but when you have been hit sworn at had plates and cups of hot tea thrown at you it is sometimes difficult to dissociate the disease from the person

This is the only place I can let off steam and if you think thats wrong then it is your opinion but for me it is a release I need. I care and I mean I do care for my mum 24/7 with a very occasional 2 hour break when she goes to church or guild and I spend that time cleaning her room because she hates me doing it around her.

I made a promise to my father on his death bed that I would care for her - had I known the road would be so tough without ANY support unless I beg for it and fill out at least 3 forms each time I would never have made that promise.

I have given up a career in senior management to make sure she has what she wants when she wants it, and that she has what she needs when she needs it.

You can tell anyone you want that I dont look after her but let me tell you this - when she was in hospital because she had a TIA the doctors and nurses allowed her to fall 4 times yet while I was with her she never fell once. The doctors prescribed the wrong medication for her which I noticed in time. My mother was left in her own urine for over an hour - at home that never happens for more than 5 minutes and only then if I am on the toilet upstairs.

My care for my mother and I mean one to one hands on care takes about 8 hours every day so please dont berate me for letting off steam in here. When our infant does something that amuses us we tell people when they do something horrible like putting their hands in their nappies we tell people.

In here we ask for advice on how to handle that and if we are less than politically correct about it it is because we are not trained professionals we are tired family members who need some help. I never knew for instance that disimpacting a bowel for my mum (doctors in UK will not do that) is something a professional MUST do. I never knew that low sodium levels could lead to little episodes that look like mini strokes but arent so while we may use humour to mask our fears worries and anxieties we do at least share useful information too

Well she has taken to criticising my care because she has gone to other posts I have made outside of here so I am afraid she has to have a blast I am spitting feathers right now....
Right Shelly I was playing nice but you need to know a few things first

1 "...because I had to clean her very very throughly and now she is sore.....more than one way to skin a rabbit!!!! " That is flat out INTENTIONAL ABUSE.

Actually it is not abuse - my mother had to be cleaned because she was smothered in faecal matter and if that had gotten into the urinary tract she would have got a UTI. Had I not cleaned it that would have been abuse - and yes it left her sore but there was so much that I had to clean that even the silky softenss of the specialised flannels I use and the emoluent I used to clean could not prevent that.
2 "... If he got through the door I would have no hesitation in chucking him back out and he would get much more than a piece of my mind the vile creature." You are a danger to society. I fear for your parents. You are mentally and physically abusive, and probably abused as well. You need heavy tranquilizers. Seek help. Immediately!!

Well you managed to get one thing right in there Shelly I was abused ... by my brother the same brother who has an injunction against him because he threatened my mother and stole 10k from her so yes he his a vile creature and how dare you challenge me on anything you dont know the full story of

Sorry folks for the rant but she has also picked me out for a roasting over something else too so gogin over to that discussion now to deal with it

Its ok JessieBelle I guess I just am a vile person but I am not abusive never have been never will be at least not to others - right now I feel she is perhaps right perhaps it is me that needs euthenising at least I would be free from Shelly's harrassment

Jude, we love you! Don't even think that way! Thanks for starting this thread; it always makes me feel better.

Actually I am feeling just the way she wants me to feel but I am not going to let her amuse herself at my expense. I am British proud of it and I do a d*mned good job of caring for and about my mother's well being. So I will sit and relax and drink more tea before giving mum her 2am meds and getting her onto the commode. Then I will sleep for 2 hours before she calls me in then if I am lucky maybe get another 2 hours before my day begins again. Trolls have to sleep sometime if not she will end up as sleep deprived as we all are and then she might be a little more acid like we are sometimes. Bless her

My mum is well looked after so dont worry on that score. Im becoming more worried about you and your mental well being and your welfare you seem very agitated is it because you are being neglected in some way? It is quite normal for people who are finding it difficult to cope with their circumstances to throw people off the scent - perhaps we can help you in some way I say we but it will have to be the others because I really must get some sleep before dawn

Jude, I fully understand the purpose of your Screaming Point blog, and appreciate how hurtful these reactions can be for you. It takes a special person to provide personal care in the area of bodily functions, especially toileting. Before my dad was placed in a home, and when he came out on visits, my stomach would churn when he had an accident with his ostomy bag. On a few occasions it burst, and I had to clean him plus sanitize the bathroom. Changing the bag was actually easier, and I did it for him on more than one occasion. But, God love him, he would spend hours in the washroom emptying it himself. I know he didn't expect, and would not want me to empty it for him like the nurses did at the home. However, while mom would rant and rave, I would change him with as much dignity as possible. I don't have half the fortitude and professionalism that you have. All the power to you.

Globe I did gross out when I had to disimpact her bowel for her - but I haven't been trained to do that and so it was really quite scary when the medics wouldnt do it for her. She was in so much pain that something had to be done to remove the blockage. I did finally ring the doctor a second time to say I had been told I shouldnt do it and she agreed that it was something they should have addressed for me - hm bit late to tell me that now though. I actually can cope with rears its the frontal genital area I find really hard to manage and I am a little concerned that because she wants to do the wiping for herself that she is wiping too hard leaving her sore from time to time apart from the time when I made her sore after we had a mammoth explosion that literally went everywhere and the cleanup was particularly difficult just to avoid an infection risk let alone anything else!

I am quite glad I dont have to deal with a stoma bag my friend has that and gets a lot of soreness around the opening as well as the obvious problems associated with emptying the damned thing. She always made me laugh though - if there was someone commented about her using a disabled toilet when to all intents and purposes she looked fit and well out would come her spare bag and she would go into great detail about its usage until the other person went green. She knew she was being naughty but you could see she was just exacting punishment - fair game in my opinion!

They did and I was the target and despite everyone's good advice I fell for it but it IS hard when some idiot thinks it's OK to target someone who is doing their best. Interestingly enough she's not new she was on here on Oct 3 2013 Asked by shellyM · 1 Answer. Oct 3, 2013. Would it be appropriate for me to tell my mother-in-law that she should take a bath because she smells… so a very kind tactful soul that she is has seen fit to have a go at me because I am insane abusive mental and anything else you care to throw in that pot

If and it is a big IF she was being serious about her health though it would seem she is ranting because SHE is being abused and while I found it more than difficult last night I was concerned when she said her siblings weren't great and that she had cerebral palsy and yet had cared for her parents till their death and now she herself was disabled.
Thats the trouble with potential trolls - one day it wont be a troll it will be someone with serious issues that needs help and doesnt know how to ask for it in the conventional way.

OOps let me correct that it was Shelly M not shelly B so my comments are totally irrelevant apologies all

Why is it when you act in your parents best interests that they dont seem to understand no matter how many ways you try to explain it (and I do sorta know the answer to that one - dementia!)
Since mum has had a formal diagnosis of incapacity I have had to be responsible for all the finances - something that although she hates she also knows she can't do any more. So we agreed I would take care of her finances and we would talk weekly but also anywhen else she wanted about her banks statements etc (she was a bank manager)
Over the last two weeks I have noticed money 'drifitng' out of her purse on the days I take her to the local community club. No point in challenging her - it is her money when all is said and done BUT I still have to account for where it went so I asked her - now I did sort of expect her to not know but she knew perfectly and it went like this - I will do it in $ so you have a clue as to the amounts
150$ to the nice young man who takes me and brings me back from club (that would be the taxi driver I pay to take Mum because he has a disabilty friendly taxi)
100$ to the lady that does the cat collection
I havent been to club for a few weeks so I gave them 150$
And she said with a smile I put 100$ in the collection
I wrote it all down for you
And bless her she had but hell how do I stop her giving money to taxi drivers - actually I know the answer to that one he wont be taking her again
From being such an astute handler of money she has gone the other way yet I am constantly accused of spending her money like water - go figure

I have reported the rest of her rants against me - I hope no-one minds that I have but it was that or call in the police to investigate cyber bullying and I think too much of this site to do that

The thing about trolls is they count on pushing your buttons and getting a reaction, a debate, a defense from sincere users. You can't assume that the profile is remotely close to the real person. It may not be. It usually isn't. A lot of internet trolls are socially inept, repressed, angry people who never learned how to handle frustration in life and have a lot of other issues.

When we get trolls here, disengage and don't respond no matter much you may want to. Your truth is not going to change them. It's more like gas on the fire.They are a force of chaos on every single board there is on the internet.

Report them, don't talk to them, and they will go away from lack of an audience. No attendees at their "affentheatre" (Monkey theater in German) and they move on pretty quickly. But if you take the bait...uh oh.

I wish this board would upgrade to have features like "hide user" "report user" " hide conversation" and features most other bulletin board systems have in 2015.

The really sad thing is I KNOW to do that yet when it is a direct personal attack on something I care deeply about I get rattled really quickly. I have to say I would have been much more vitriolic in the defence of others but that's just in my makeup but thank you everyone for your support public and private last night xxxxx