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?
A little boy went up to his mother and he handed her a piece of paper that he had been writing on. This is what it said:
For Cutting the grass $5.00
For cleaning my room this week $1.00
For going to the store for you $0.50
Baby-sitting my kid brother while you went shopping $0.25
Taking out the garbage $1.00
For getting a good report card $5.00
For cleaning up & raking the yard $2.00
Total Owed: $14.75
Well, his mother looked at him standing there expectantly, and you could see the memories flashing through her mind. So she picked up the pen, turned over the paper he'd written on and this is what she wrote:
- For the nine months I carried you while you were growing inside me, no charge.
- For all the nights that I’ve sat up with you, doctored and prayed for you, no charge.
-For all the trying times, and all the tears that you’ve caused through the years, there’s no charge.
-When you add it all up, the cost of my love is no charge.
-For all the nights that were filled with dread, and for the worries I knew were ahead, no charge.
-For the toys, food, clothes, and even wiping your nose, there’s no charge, son.
-And when you add it all up, the full cost of real love is no charge.
When he finished reading what his mother had written, there were great big tears in his eyes, and he looked straight up at his mother and said, “Mom, I sure do love you.” And then he took the pen and in great big letters he wrote: “ALREADY PAID.”
(original by M. Adams
SO many of us feel unfit, feel guilty, feel selfish, constantly doubt every single decision, grieve the fact that all we can do is all we can do. But even if we could do more than that somehow, it would not make our loved ones happy, restore a relationship either ruined by dementia or one that never was, or let them live on as we so fervently wish. We are human beings, not God, and not without human limits. You will be stronger for having withstood this, and more sure that you absolutely can and must defend yourself from false guilt and the wishful thinking that if you really loved or cared enough, you could make it all better.
And, just a few posts later, this same person admitted they were terribly depressed and anxious. Yes - a hurting soul, and who could not give herself or anyone else a chance to be human and to feel what they felt. I subscribe to the view that there is a greater courage in the one who is afraid but runs towards the disaster anyways; there is a greater devotion in the one who feels dreadful things and yet does what must be done. There is even a book called "The Secret Strength of Depression" which tried to dispel the idea that the emotions of depression signal weakness and unworthiness - that there is really a great strength in feeling those things and yet carrying on. Our emotions tell us things - important things - sometimes we need to adjust our attitudes, sure; but sometimes we need to adjust our lives and our burdens, and get help either medically or materially in creating a just a bearable life for ourselves and our families. Even the most negative emotions in the world should not be allowed to tell us that we are bad people, ever. This storm is past; there will probably be another at some point, but wiser hearts (and a little good moderation - much appreciated, BTW) should prevail.
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.
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
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.
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!
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
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
Barbara
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.
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
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.
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.
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