Hello Giveup...I have been exactly where you are and it is so isolating. I am glad you have started this thread to garner some support for yourself. (Which is vital - because who is going to care for your dad and son if you fall apart).
My Story - hope it helps.
I became a lone parent in Nov 2006 and moved back in with my parents until I finished my university degree...was in my final year.
In January 2007 my mum was told that her cancer had returned and was terminal. My dad's health and behaviour was causing concern over this period and in July 2007 dad was diagnosed with Huntington's Disease.
My son was seven when I moved back in with my parents so you can imagine how unpleasant the environment was for him. We had the doctors and nurses in daily to see mum, operate the morphine dispenser etc. Mum was being violently sick hourly and I was constantly washing bedsheets and cleaning mum up - which meant my son was not getting the attention he should from me.
I was always telling my son to be quiet, stay in his room and out of the way of my dad. My son became quiet and withdrawn at home but as soon as he went anywhere else such as school or shopping would end up so hyper and over excited at being able to run around that he would get himself into trouble for being out of control.
Huntington's Disease causes physical, mental and emotional difficulties...some of which will be the same as the dementia your dad is suffering from. Of particular concern was the aggressive outburts and mood swings that my son had to witness. Dad could not process mum's illness and did not believe that she was ill - this led to him hiding her medication and refusing to allow me into the bedroom to provide mum with food. (He thought that if she was really hungry she would get up and collect the food herself in a kind of tough love scenario). A doctor was called and they arrived with paperwork to section dad...in the end this did not happen but he was assessed a number of times.
Much of this my son could observe, he heard on the telephone to doctors about mum and dad...and sometimes sobbing down the phone to friends and family.
My wonderful GP at this point took me aside and explained that he did not think it was a healthy environment for my son to be living in and suggested I move out. I was adament that I would not - my parents took me in when I separated from my husband, how could I abandon them now that they were sick. The GP was kind but firm and made it clear to me that my ability to be a proper carer was being impaired by living in the house...I remember him telling me that paid carers would refuse to work 24hrs a day so why should I have no respite.
The other point he raised GiveUp was that any social services care package would be reduced because I was there...'if you do it all bentneck they will let you do it all'.
After much persuasion I agreed to apply for local authority housing...but I would need to be close to my parents to continue to care...and there is a distinct shortage of housing in that area so I was not hopeful. Not to be outdone my GP told me that he would write me a letter explaining all the circumstances.
Sadly mum died in October 2007...dad went really downhill after this and his agression aand behaviour became much much worse. My son and I were not allowed to use the kitchen so I had to store food in a bedroom cupboard, cook bacon etc on a George Grill and take my washing to my sister's house. On one occasion my son and I came home an hour earlier than expected and my dad could not cope with the change of plan so he kicked off - resulting in me and my son sitting with our backs against the bedroom door whilst dad tried to force his way in. These are just a couple of examples. Things like this were happening every day for months.
I followed up the housing application and was told that under normal circumstances I would not qualify becuse there was plenty of space in dad's house. I explained what was happening and was told the best thing to do was to apply for 'homeless' status.
A housing officer came out to the house to take the application and she explained that I would automatically count as homeless because dad had a terminal illness. She was aware that the house would end up being sold to cover care costs - or in the event of dad dying the house sold and the money split as I have a sibling. This meant my current accomodation could not be assumed for the immediate future and I was accepted as homeless and moved up the list. Usually for a homeless application you have to agree to move into emergency accomodation until a house becomes available...my GP made it clear that was not acceptable because I had to be within walking distance of dad's house and the emergency accommodation was twenty miles away.
So it was agreed I would stay where I was until a house became available. I was gobsmacked when a matter of weeks later I received a letter allocating me a house - within the same postcode as dad! It seemed like something was going right for once.
I assumed that as soon as the house was empty I would be allowed to move in straight away. However the local authority decided to decorate and carry out cosmetic building work which meant they could not commit to when I would be given a key. (I received allocation letter early October and they were talking about me being able to move in towards the end of January...which I could not understand as it was supposed to be emergency housing for someone who was classed as homeless!).
By this point dad was refusing to allow me to close windows, curtains, doors or have any heating on. My son and I were sharing a pull out futon bed whereas when my mum had been alive my son and I had our own rooms in the house. It was coming into November and we were going to bed in pjs, trackie and fleece as every window in the house was open.
GiveUp - this is the part of the story I wanted to tell you...and the advice I wanted to share. Write to anyone and everyone that you think might be able to help, with as many letters from anybody that has anything to do with your family.
I had the letter from my GP raising concerns about my and my son's health and suggesting there was a child protection issue if my son remained in dad's house.
My university tutor wrote to raise concern that I had withdrawn from my course to care for dad and because there was no way I could study where I was. They were hopeful I could complete my degree if I was living in my own home in a settled environment.
I had a letter from dad's support worker/specialist stating that dad's health was suffering because we were living in his house. His illness needs fixed routines and a calm environment - having a seven year old child in the house was causing dad undue stress and increasing the aggression.
These letters were sent to housing officer and repairs officer at the council explaining that I was happy to move into the house regardless of the condition as it would be healthier than where we were. A copy went to the local MP and Lord Provost of the local council and asked for their advice in the matter. (I struggled with doing this as I hate complaining or making a fuss...but one thing I have learned through dealing with all this is that making a fuss works. A letter from an MP to a housing officer querying the delay makes all the difference).
I would watch the workmen arrive every day at my new house and then peek through the windows at night to see what they had done. The foreman knew who I was and he was sympathetic to my situation but was limited due to manpower...it was coming up for christmas holiday shutdown. One day I walked past and the foreman stopped me saying 'you must have friends in high places'! There had been input from the MP and it was all systems go to get me moved in before Christmas. A couple of days later on a Sunday the foreman called my son and me in to look at the finished house...he was so pleased to be able to show my son where all the plug sockets were so my son and the foreman could decide where the Christmas Tree would go!!
GiveUp - I understand what you are saying about the house being your family home...but slowly my son and I are making this new house our family home. My son has sleepovers, had a bouncy castle BBQ for his birthday and football goals in the garden. This is his home just as much as my parents house was my home.
On the other hand if you want to stay on in your dad's home then please stamp your feet, shout and cry at whoever you need to for help...be that GP, social services or family and friends. Get the professionals to write letters to support your position...it does make the world of difference.
And I know this seems hard to believe right now...but this too will pass. That was my mantra through all those months and it is true...I could never have imagined that I would be sitting here now in my own house, graduated last summer and with a much better relationship with dad then when I was living there. I see dad every day and although he is still prone to kick off at the drop of a hat - I can leve his house and come back to the relative quiet of my space. I care for dad much better this way than I did when I was there twenty four hours a day.
A last word...sorry this is such an essay...I found every professional involved in our famlily situation to be supportive, understanding and willing to do whatever they could to help. Please do not be afraid to contact people and ask for help...that is what they are paid to do.
Take Care