finally have found the will and energy to pay more attention to this website (any myself). I am really interested to hear from others. I wish I had a computer or this website while I was taking care of my mother. It all started along time ago, when I was young and I overheard my father telling my mother to put him in a home when the time came.( My father is 50 years older than me, and my mother was 38 years older than me). Death, making plans for "aging" were discussed openly and frequently in our house (my mother was a RN, and midwife) Oh yes we discussed it. When I heard my father report to "stuff him in a home" , I barrelled in from the tv room and exclaimed " over my dead body. you will die in your own home, with me by your side. what are daughters for?" I still don't know where I got this, because I was so young when I first said it. I think I just wanted to use the expression "over my dead body".
years later, I didn't realize how that statement was going to shape, mold, direct my life. When I turned 30 my parents were in trouble. They were just not taking care of themselves like they use to. My dad had heart, lung and kidney problems starting back in 1989. It was now 2000, and his doctors kept telling us he will die within the year. I was pretty use to dropping everything and running to help my mother with my father. He was a demanding patient, and felt very justified in his demanding. My mother started to get confused, lost a ton of weight, and started threatening my father. (She wanted to bash his head...I really thought this was just normal marriage behaviour). So many little signs, little hints that just don't add up, until you take the time to really look at them.
Finally in 2003 we recieved a diagnosis. It took 2 years of advocating. I researched every workshop, event, document on the matter. It really helped that I was working with seniors and had been offered a job by the local Alzheimer Society. All information at my finger tips. However, I find there is a HUGE GAP in advocating and legal material. It all says the same thing...POA blah blah blah. It tells you to chose a POA, but it doesn't outline specifically what that POA will be allowed to do on your behalf. There are many issues I have with the legal system in regards to our vulernable populations. It is costly and time consuming to get paperwork in order. I could go on for hours...but i wont at this time
Our difficulties were not the caregiving aspects at all. My mother was an absolute joy to be around. She very rarely experienced stress, anxiety or depression. She was so tiny and frail, I didn't and almost won't let anyone else transfer her. After my father died in 2006, she took on a new attitude of life. She cried and mourned the death of my father, but she was practical and focused to heal and take care of herself first for a change. She had all kinds of trouble walking, swallowing, talking, but not singing. She could sing whereever, whenever!! It was a long 4 years watching her deteriorate ever after I didn't think she could get worse. Yet her essence remained fully in tact. My husband and I worked very hard to keep my mother healthy, which we attribute to her good mood. We would try diet, exercise (including laughter yoga**)before medication. My mother was medfree, and healthy other than that pesty brain deteroriation. We also used Reiki, Shamanism, and LOVE!!
We (my husband and I) have so many creative tips, tricks, diets, methods of getting the food in, yet we still don't understand the legal and advocating aspects of caring for someone with dementia. We were not supported by my siblings. Many accusations were made (my sisters live out of town and didn't visit, yet sat on their computers emailing fodder at what a crappy job we were doing)  This attitude raised eyebrows with the case worker, and other health professionals, inthat maybe my husband and I were here for monetary reasons. I struggled for two years of advocating just to prove I was capable of the job. I spent more time proving I could do it that actually taking care of my mother, even after my time at the Alzheimer Society. Looking back I feel the professionals were really looking out for my mother's best interests. I just love that someone can make a disparging comment, and it is believed because not everyone chooses (or can) to keep their loved one at home. The repsonse I would recieve as to why I was being investigated was " well no one your age does this. Don't you want to haev a life" I was accused of advocating what I wanted for my mother, not want was best for my mother. I lived with my mother everyday. Albiet the consenus was that she would fair well in a nursing home, so why not place her there and take the burden off of me..
I will say it again and again. I DID NOT GIVE MY MOTHER AD SO I COULD LIVE IN HER HOUSE> I AM RESPECTING HER WISHES TO REMAIN HOME> I WOULD LOVE NOTHING MORE THAN TO WORK, GET MY HAIR CUT, GO TO THE GYM....BUT SHE WANTS TO STAY HERE. There was no personal benefit to me to keep my mohter in her ownhome.  There was alot of jealously because my mother placed me as her POA PC, and was the only one she would talk to. The last two years of our time together, the health care team rose to the occasion, and not only kept my mother's best interest at heart, believed and fought for her to stay in her own home, supported and protected us from the naysayers.

Pretty tired, as talking about it tired me out. It is great to have a place to share. My friends are so sick of hearing about this (they love to hear mom stories, just not bitter sister stories)

Peace out to all
this is a hard jounrey, not a choosen journey, however it is a worthwhile journey with it's gifts hidden mysteriously. just when you think you can't, something pushes you and before you know it you are doing it.
christine