Damned if I do and damned if I dont? Carer family expectations

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Hi, I am a fairly timid quiet person with simple lifestyle. To cut a story short Mum has Alzheimer's, bitter anger, stubborn, realistically in around mid stage 2 old rictor scale with behaviours from accusing the bank teller of stealing, dobbing people in to centrelink, telling people they are horrible sort of a victom inside demented mind. The woman as a mum was really not very affectionate, expected things to just go according to her plan. Most of us 5 siblings were shunted off and unfortunately got the you're 14 now off you go, a bit harsh but true. Now as a adult mums care is shared by 2 of us. The beginning of this saga was others couldn't provide help as living over 15-20 hours away. One decided not to even answer phone calls when five years ago we needed to put things in order so the counsellor said give them 3 more goes if they don't reply put things in order, get a will done, poa, guardianship etc etc. Did so five years ago mum wasn't as bad as she is now, we put in for assessment and got a home care package it went well, we assisted whilst trying to cope with careers etc. We had ups we had downs we left we came back we did tried gave the last three years I travelled home every weekend to give everyone a break do the jobs the ordering of stoma bags, the financials, the payments of bills went through outbbursts of your stealing etc your horrible etc so then a phone call mum said I've fallen in shower. I decided to move back but not live with her, been there done this. For a year and a half between us both, we share care, fixed up home care limited as mum cannot afford full care, helped get new bathroom, flat accessories that will help, I do nearly everything possible, we ask we give care as best we can. But just recently again mum refuses to eat, I don't want it, I hate all of you, go away, I did not ask for this. etc etc etc. We have all been persecuted at the stake like we are wicked witches of dementia. Just recently a family member said to me your mum doesn't like you, doesn't get along with you, didn't want you, doesn't want you around, and calls you names. I just went quite mad at home, cried my eyes out and thought OMG what the ???? did I do now. Over the last week it's has been like living on a witch hunt, forever being told my family isn't good enough, the other sister is good you're not, it's like a game I actually predicted this behaviour and told my sister she will try and tear us apart. Its like she must see my daughter before anyone else. Just recently me and my son sat back very sad that mum didn't want us to go with her to a funeral but the other sister demanded she goes with her. I just sat back and refrained. Yesterday was awful to me I got told Im not good enough not wanted not loved by family that has to endure comments from my mother. After five years of doing financials, paying bills on time, getting a bathroom safe for her, doing daily meds, getting home care support so she will have some type of social life as she has refused and condemned every support here in town. Clean pooh off walls, toilet, stoma cares, personal cares sort of re teaching mum to brush her teeth, wash her hair as sores on scalp from not washing, if she goes without a shower for three days her stoma smells her skin errupts with bacteria, blisters etc etc the most recent outburst was this the fact that she doesnt eat properly even though we descreetly make lovely meals for her she throws them away and buys lollies. Her teeth gums are repaired but dentist said what more can you do she cannot cope with hygiene plates etc. All these different behaviours we have endured right down to each and everyone of us is not allowed to go there we are all horrible people. But to single me out as a horrible person, put me into a state of negativity I have not slept, eaten, just got a pack of cigys and smoked them all from stress. The words keep ringing in my head and little girl syndrome of I hate you came back to my head. This is the saddest thing I have ever seen. And I have worked in aged care for twenty years Ive seen the best of the best and the worst of the worst. I have looked into my heart just to find a solution, but I cannot. We dont have much choice but to continue the cares until mum can afford more home care and when we try to take her to Dr or get assessment done she lies and says we are forcing her to do these things. We are not. My family member whom beared such news said stay away for a bit and maybe she might realise how much you do for her or forget her outburst. Today I said I am not going I am sorry that maybe she will forget her meds not eat not shower put pooh on walls and sit in front of the telly and hate everyone. My family member said you know she is like a little girl not getting what she wants. It's like damned if you do damned if you don't??? Think some of us are in the same boat don't get me wrong I understand but gosh this gets hard sometimes. God bless. Hope everyone out there is aok.


From mars, my heart aches for you.

It sounds as though your mom has long standing mental illness, and dementia on top of that? Oh My!

Do you have access to a counselor or therapist who can help you through this stage? Is mom's doctor aware of her behaviors?. Sometimes psych meds can be used to ease the agitation of the sort you mom is showing.
Thanks for replying Barb I'm in Australia to start with our services cost a fortune. Yes I found a beautiful lady mediator from care Australia she is helping me through we only get 6 visits other than this I won't be able to afford her fees. I know have been trying trying to get a Dr now mums last Dr left region. I was suspicious of mental illness many years ago such as manic depression and anxiety she takes aricept which worked really well for a few years the specialist has to re assess. She has aricept early morning round 5:30 am I snuck in a natural herb which was not going to contraindicated the aricept and she was mellow . I didn't go to mum today after 11/2 years. It's ok I will get over it all. This is amazing cause I sort of suspected a aggressive depression. I am going to see if we can get a appointment as mum refuses to go to the Dr. Because of all the confidentiality laws sometimes we cannot go speak to Dr they tell us we can't discuss it. My GP is beautiful she may shed some light. I so appreciate your answer I feel suddenly I know what to do. Thanks am not used to the site yet but I will try and work it out and pop back let you know what happens. Thank you so much am beside myself god bless take care
I'm so sorry you have been treated so horribly. Is there a way you can take a step back for a while? You can still help. You can make calls. Follow up on calls. Make appointments. Do some shopping and leave it with whoever is with your mom.

When your mom is gone you'll still be left with the scars and the pain. That isn't right.

And I agree with Barb in trying to find medication that will settle your mom down.
Thanks for the replies guys. What I did was not go this weekend but the weather here has reached extremely high temperatures. So I plucked up the courage to go to mums to clean air conditioner and set a new fan on remote time. She hasnt had a shower complained her head was itchy I offered help but just said no I can do this myself. From this site i was encouraged to re teach mum a little bit. So showed her the fish food said please take a pinch and give it to missy fishy, explained the St johns and she said yes these feel ok, I tried this and found a very low 5% contraindication with her very early med at 5:30 am. I couldnt stay totally away with heat soaring temperatures. The rest well I understand the emotional centres are now going to be affected. Words can be hurtful coming from family members sometimes but end of the day they are not there doing this enough to know how down she has gone. I had a good chat with mum she was still very cranky but explained that in a confused way she is angry with herself and the fact that she doesnt like people. Thats ok I said as long as you know myself and sister do love and care about you. She honestly had no emotions in her face. I do feel Dr will have to be spoken with, she has aggression, anxiety, depression, paranoia,delusions and hallucinates about dolls yes dolls they get up in the night and will cut your head off. This sounds crazy but its not, one evening I had to stay with mum after a surgical procedure she got up in the night and said dont let the dolls get you, they will come down and cut your head off. I literally thought back then well she needs assessment. I have spoken with my sister this morning and told her I was writing and asking for some help. Yes we do have things here but I liked the stuff I was reading here so thats why I chose this. The mediator has said you know what your aunty or any other member really hasnt the right to tell you whether your mum needs more assessment or not, they are not Drs or RNs or have any training themselves. So I rang my sister and we have had a discussion about this all. I am having to find another GP and will see them myself regardless of the confidentiality. There is also the RN to speak with. Family support is minimal but I am used to this. What has been said I will get over it as my sister has said mum told her husband not to come near her she feels uncomfortable, its really bizaire though because everyone just doesnt trust anyone these days I can understand why I really can. The scar emotionally is pretty much the same scar and cross I have carried as a early teen. Its ok my son has said it is what it is. So we have agreed. This weekend I am sitting back a bit, I know the shower is safe now, her stoma cares well if its not done bacteria will come and it becomes uncomfortable again. Showering well as your site says go with the flow, dental well go with the flow, eating well she has food everywhere I cannot totally control what she eats. End of the day is that when she goes down again lets hope its not in a big way. I can only hope to get in to see a new Dr whom will listen and perhaps prescribe a more appropriate perscription. Today is another day again. For now is for now. Tommorrow I just wait for that to come. Its ok I have carried this before. Yes it hurts my friend whom is a AIN said its like people want glory for the little care they provide. We know there is no glory at all its real. My sister seems ok but I think she doesnt really believe or again another in denial. Its aok I have made a decision to go to GP tomorrow and just not tell them at all. I have told my sister I am going she said aok. sad when everyone just wont communicate properly. Empathy for mum is what is needed and for her to stay at home longer is something she will have to just accept. There is no one else at this point. We will see by the end of the year how financially stable mums affairs are and then seek a new package. I feel this is the only compromise. And some medications for sure. I have sat back and said ok we wont do this we wont do that but realistically if we dont plan properly its either I will go down again burnout or mum will just get more aggressive and thats not fair on her. I really thank you guys because its given me a direction and can put it into action. So appreciated. God bless keep you posted.
Hi there. I'm not sure whether you have seen this website, but you can organise for an assessment online: https://www.myagedcare.gov.au in Australia. She needs the Aged Care Assessment Service to go out and assess what's going on and give you access to a new package of care which is subsidised. If she's a pensioner, she should be be prioritised. All of this you can start the process online. Let us know if you need more help.
Yes we have a provider yes we know myagedcare, yes we utilise our provider at the moment, however the problem is mum doesnt want them in her home, and has thrown a few out. Its awful but we know our provider extremely well and I talk with the co ordinator all the time. The package of course can be redesigned and were about to do this very shortly. However it is the stage she is going through. Thanks for the message but our provider is wonderful. I am going with the Dr then re assessment with our current provider. Thanks the rest is emotional I am sure we will all get on the same par eventually. I like agingcare site . We know she needs re assessment its how we go about them is the problem and understanding her level of understanding. Thanks we have a provider who knows what we are doing and why we are doing it. We have had agedcare package in the home for over five years. We will be re assessing when we get mum over this stage of upset going through what I believe and my sister is a bit of a breakdown through the next level stage. Our provider knows our situation. She has offered anytime to have a meeting and we have decided to get the Dr meds first then seek a re assessment of our package.
Thank you
Good luck! You're in a very difficult situation. I hope it gets better soon!
Are you giving your Mum St. John's Wort?
It has been discussed that this causes an extreme negative mood just hours after taking it. At about the time it would be leaving the system. Several have commented the reaction is so bad (this in people aged 30-50) that they themselves were surprised at how they felt, and had never experienced irritability and aggression that way. Stopping the herb helped.
Look this up if the information can be found, or talk to others who have taken it.

Of course, this does not explain your Mum's symptoms entirely.  But I hope this heads up will help her.
I was going to ask about that too, Send - Frommars, herbal does not equal harmless; very low contraindications do not equal no contraindications. Don't ever give your mother any kind of remedy without first consulting her doctor. St John's Wort preparations can be very effective indeed, and sometimes that can be a mixed blessing.
In U.S., the NIMH wrote:
St. John’s wort is known to affect how the body uses and breaks down a number of drugs and can cause serious side effects.

Serotonin is a brain chemical targeted by antidepressants. Combining St. John’s wort and certain antidepressants can lead to a potentially life-threatening increase in serotonin levels—a condition called serotonin syndrome. Symptoms range from tremor and diarrhea to very dangerous confusion, muscle stiffness, drop in body temperature, and even death.

Psychosis is a rare but possible side effect of taking St. John's wort, particularly in people who have or are at risk for mental health disorders, including bipolar disorder. Taking St. John's wort can weaken many prescription medicines, such as: Antidepressants.

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