hello everyone,
I have been reading through your posts with tears in my eyes. Maybe I can talk about things honestly with you. iIjust need to let it all out.

My mum was recently diagnosed with alzhiemers. She is in her mid 60's. I would say that she is between stage 3 & 4. Her mother also had early onset dementia.

Mum lives alone at present just a few minutes away. I am her sole carer and I have POA and health gaurdianship. I have a great supportive family (hubby and kids) but a lot of drama / trauma and nastiness in my family of origin. No support there.

I have worked in aged care and in dementia units so I have every understanding of whats ahead of us. I also work at times providing support and counselling for carers. I think thats why everyone just thinks I can and will do it and I will be fine, I will cope, yes ! Good old Lolly !! Aways there for any problems!! copes with anything!

Well guess what....

i just want to be a daughter whose mother had Alzhiemers! I am crying as I type this. I am just so.... angry, sad, tired, overwhlemed....dare i say the G word... guilty... i just want to run away for a month or two!!

Just when my life was begining to sort itself out, amnew job that I love, my own business starting to take off, adult children planning to fly the coop in the next 12 -18 months....
Finally the possibility of some time for myself and my dear hubby and maybe we can finally get ourselves financially on our feet and stop struggling...

Now life has turned it all upside down... a long planned holiday cancelled... I find out that all my mums life savings are gone... stolen by a con artist who is now in jail and I have no recourse.... mum could never give evidence. I tried and tried to protect mum from this person but she was stroppy, argumentative and would not let me into the house for a long time. I had to choose to keep my sanity and so I minimised the contact for few years to phone calls and short visits at my home.

In those few years she lost her life savings.. (guilt+++ I should have done more to protect her) the dementia got worse and when I finally got into her house it was just unbelieveably filthy, disgusting actually (more guilt, what kind of a daughter, especially a health professional!!)


we have had assessments and I am looking at arranging some support. So far we have taken several tonnes of rubbish away, there is still more to go but I went down a few days ago to clean and i just couldn't face it ... I made an excuse and came home...


My work(which i love ) is suffering, I am getting behind and it is starting to catch up with me. I desperatly need a holiday. I took a few days off and worked flat out to catch up... truly i just can' see how i can ever get it all done.
I am having to prioritise and i can't let my own work suffer any more... need to pay the bills.... I have extra costs now as mum has no savings, just the pension.
she needed new clothes, had only 2 pairs of pants that were wearable and has needed food etc etc.etc..
there are no funds at all for... we are having to make up the difference so that she can live with basic nesecities. our savings are going to be affected...no funeral funds...have paid some outstanding accounts...

at the moment she is really pleased i have taken over her affairs and she seems a lot less stressed. she is compliant and letting me help her which makes it easier....she keeps asking when she will be able to drive again but accepts it when i tell her she won't....

I have no illusions that i will be able to nurse her at home... my goal is to keep her at home as long as i can and then move her into a hostel/ Nursing home close by...
I am very lucky that these are things that we discussed years ago when mum knew what she wanted so it does help to know that we talked about these things and i am doing what she asked me to do..

i just don't want to have to do this!!!! as someone else said, when it is your family member you don't get to switch off and go home... here i am up at 2 am again, trying to catch up on my own work and sort through a lifetime of papers (she has kept EVERYTHING, absolutely everything)....

my health backgound means that people expect more of me and also that I have no illusions about the reality this situation at all. so i am hoping that here amongst you all i can just be my mums daughter who is devastated by what is happening and needing support

thanks for listening, i have had a good cry and a cuppa....

lollylegs

Dear Lolly,

Sit down and take a few very deep breaths. Tell yourself that the past is gone and you can't do anything to fix it. My Mom's life savings went to the nursing home before she got poor enough to get on Medicaid (State operated health insurance for the indigent.) It's gone and that's all there is to it.

Your Mom was the victim of a con artist. One more reason for anyone with a relative starting to act "odd" to keep a closer watch - but it's too late now. Let it go.

You have 3 priorities. You have to keep yourself well and rested enough to hold down your job and get your business off the ground.

You have to be a partner to your husband and a good mother to your grown up children.

You have to get your mother into the care program she NEEDS right now, not "try to keep her home as long as possible." My last post was on this same subject, so I won't repeat myself.

Keeping the AD patient at home is not necessarily an act of kindness or caring but prolongs the agony and makes the final move harder.

You are not alone. We have all been through this or are still in the middle of it Some of us are 'survivors' of AD care. We ranted and raved, tore our hair out and knocked our heads against walls. We reasoned and explained to the AD person, and repeated all of the above the next day. We were criticised by the relatives and pooh poohed by the neighbors. We were hated by the patient. Sometimes hit or threatened. Even their doctors didn't believe us.

Being in the health field does not make you a natural to be your Mom's caregiver. People told me that - "You teach 3 and 4 year olds so taking care of your Mom at this stage should be a piece of cake." NOT! She is your mother, an authority and respect person in your life, not an anonymous patient. She should be cared for by those trained to care for anonymous patients.

Good luck with it. I am glad your husband and children are supportive.

Love,

Martha

Hi Miss Lolly,

It sounds like you have a mess on your hands, but that you are quite capable of taking care of your mom and her "giant mess"!!!

You are both so young, to handle this terrible disease! I do feel for you. So, is your mom still living by herself? Can she?

I laughed at the big giant tons of papers and many other things. That is my mom and my dad. I know where and what most of the paper stuff is. And only throw away stuff that is over 10 yrs. old. They would yell. They used to and still try to, keep the envelopes on bills and everything else!!! I chunk the envelopes, when I see them...

Now my moms "stuff" is another matter. And I cannot touch that yet. There are about 7 closets full of stuff and clothes. And underbeds and in dressers.

We have been very fortunate (unlike you and your mom), that their money is still there. But that is one of my biggest worries. I am more worried about my dad giving money to one grand (or great) child and then none to the others. I sure would like to take their checkbooks, but they are not ready for that.

So, how did it come about that your mom cannot drive? And she does not?
And your mom does not care (being in the same house and watching you) that you are chunking her stuff???? Mine would be having fits!!! :>

Take care of you and do not feel guilty and do not wear yourself out.

Love, Wannabe

I don't think you are in the US - but here if a person isn't competent to make decisions there may be some recourse. It may be worth getting legal advice -sometimes a stern letter from a lawyer gets results.

Also - try to move away from the goal of "keeping her at home as long as possible" and work towards "making sure she has the care she needs." We were trying to keep my Dad home - but being home didn't have the same meaning for him and it was causing him stress. He was surrounded by stuff he couldn't deal with, couldn't watch TV, couldn't read, couldn't do any of his hobbies any more and had a bunch of people (wife, sister, daughter) who would never have been making decisions before for him doing just that.

In a NH his life was a lot simpler and there was much more activity. At home he was pretty isolated - but at the NH he could people watch. He lived there 3 years, I don't think he would have lasted that long if we had him at home.

You will see that many of the wonderful, caring, people here kept there loved-ones at home and cared for them. Most everyone found this to be a stressful experience, that wore them and their families down. Nursing home placement is beneficial because you can go see your mom, but you are not always responsible for her 24/7. You don't say what you healthcare background is exactly, so I don't know if you are a nurse or what. This may be helpful because you would have more insight into the appropriate interventions, medications, etc. My grandpa and I cared for my grandma for about two years before she was placed in the nursing home where she is now. He'd been caring for her longer, but it wasn't until then that I stepped up to the plate and really took charge of the care. He was becoming far too overhwelmed, even with home helath and an aide for a few hours a day. I think, though, that the experience I had caring for her was way more positive than it was negative. I learned a great deal about patience and creativity. This experience has further shaped me into the excelent nurse I will become. I would not have traded it for anything in the world. Good luck with your decission!

Dear Midget,

You have found the secret of happiness .... just believing that whatever you may have to go through, it is for the best. It makes you more caring and understanding.

As much as I say "I should have placed Mom sooner," perhaps I can learn from you and start saying, "it worked out perfectly! We got her there when it had to be. " Meanwhile it is clear to the whole extended family that after falling, the the broken hip and difficulty learning to walk etc she HAD to be in a NH, so nobody criticised us .. for a change!

Thanks for sharing your insight. You will definitely make a good nurse!:angel:

love,

Martha

Martha, thank you for your compliment! You, and all the other ladies here, are a true inspiration to me. :)

hello everyone and thanks for your support, i have to say i am feeling better than i was a few days ago...

there isn't anything that can be done about the money (life savings) that has been stolen, it's just not going to go anywhere legally... the only way we could get out of mum having to pay back the thousands of dollars which was run up in her name was to declare bankruptcy which we have done.... some accounts and services are now in my name as she has been blacklisted by them....

she is not ready for a nursing home or a hostel yet, she woudl not meet the criteria... in australia services are provided to keep people at home as long as possible...i am guessing that perhaps in the US you don;t get as much help as we have here?.... when the time is right i have no concerns about putting her into the hostel/ home... it is one that she chose when she was younger and we talked about all this... as i mentioned i don;t have any illusions about what is ahead..

All the legal stuff is finalised now....so i have authority over everything.. so that has also lifted a wieight off my mind

the mountains of paperwork remain!!!! i am plodding along with it....

How did i throw out 2 tonnes of rubbish? well mum seems to passed out of that stroppy arguentative stage where she wouldn't let me touch anything and i took my kids with me so they could distract her as i tossed stuff not the truck.... anything she argued about i put back until she was otherwise occupied. she seems to have noticed the house is cleaner (thats an understatement!!) but is not overly concerned about specific items (can;t remember them all) .... sometimes i say i am going to give it some one who is poor and really needs it which works as she has always been like that.

if she asks where something is i say i'm not sure but i will look for it and then change the subject, or get her occupied with somethign else..

she was pretty good yesterday... i went and did some more cleaning.. threw out hundreds of envelopes (used) tied in bundles, heaps of cut up pictures cardboard from boxes of cat food, breakfast cereal, soap, hundreds of yoghurt containers and plastic lids.... more next week!


she hs previously resisited meals on wheels but yesterday she agreed so that will start next week (deliver a hot meal each day and frozen meals for the freezer)

so things ar eimptoving

Hi Lolly, we have had SIL on Meals on Wheels from the beginning of this year - up until then she was hugely resistant to the idea too. She likes to think she can still cook meals herself. As long as nobody actually said the words Meals of Wheels out loud it went over OK. And she LOVES the food.

For many months after the meals started though, she continued to food shop for Africa. She hasn't got much money as it is so it was a concern - but any attempts to curb that food shopping got her hostile again - she COULD cook for herself!!! She didn't NEED "those meals" etc. etc. You may have more control over your mother's budget so that may not be such a problem? I hope!!

Over time the food shopping has dropped off somewhat - but we get the daily caregivers to do a use-by date swoop on the fridge every day to make sure we reduce the food hygiene risks as much as possible.

cheers
Georgie

Hi Georgie,

yes I think that now I am organising Mums money less of of will get given away needlesly.... it is definitley easier now that she isn't fighting with me as much as before ... I just hope it lasts!!

She has been sending money to TV evangelists :mad:
..so now i just tell her that I do that for her... I give her money for her donation to church each week because thats really important to her... (even though I am not too kindly disposed towards them as they are the ones who organised for this con-artist and another criminal to meet her and live with her!!)

I understand about the food expiry dates... some of the stuff I found in the fridge / freezer was up to 5 years old. a few unidentifiable things got tossed container and all!!

aAbout the driving... a few years ago she was unable to drive as she had an incident where she ran off the road ("as you do" she told me) due to sleep apnea...... she has been a dangerous driver for as few years.. she slows right down when there is traffic (10 - 20k/hr) and she was an accident waiting to happen. I was greatly relieved when this happened but a few months later her doctor told her it would be allright to drive close to home ( as someone else said "kill someone you know") so she started again.

When all this blew up a few weeks ago I finally convinced her to stop driving and we moved the car to our place after she kept driving. A "helpful" family member told her she should never give up her licence !! :rolleyes: so she does sometimes ask me if she can drive again...


The aged care team doctor and neuropsych were in full support of her not driving and the removal of the car..... I couldn't live with myself if she hit and killed someone.... we had that happen here last year with an elderly driver, 1 person killed, a child critically injured. I would rather put up with the occaisional problem with mum than try and live with that. I also deal with relatives of accident victims in my job so i wouldn't wish it on anyone. I think sometimes that we all think that a fatal car accident won't happen because they only drive slow, well it does happen, and it happens close to where they live and when they are going slow. it's too late then to say that we should have taken away the car ealier..

Anyway, this is a great forum and I am enjoying reading all the posts everywhere. It has really lifted my spirits, returned my sense of humour and made me feel that I am not so alone. thanks to all of you for your support :)