I hope I don't get judged too harshly for this post ......
My 82 year old mother has PDD. For most of my life, my mother made my life hell. I'm pretty sure that after I was born she had post natal depression (not really treated back in the sixties). Mum's doctor also told me in a recent discussion that it's possible she had bi-polar disease for many years, which probably explains a lot of her behaviour towards me and my late dad. She has always been very aggressive, nasty, physically and verbally abusive. Dad had a lot to put up with and in my opinion, her behaviour led to his death two years ago (he suffered terribly with psoriasis and then needed a hip replacement which they couldn't do because of the psoriasis). He died incapacitated and unhappy. I'm aware that the recent diagnosis of PDD explains a lot of her behaviour at the moment, but people who don't know her well put it all down to this, whereas I have memories all through my life of her terrible attitude towards me. I'm now looking after her, but find myself constantly searching for information on life expectancy, and finding little information. I feel guilty for wishing her gone and trying to anticipate when this is likely to occur. Am I the only one in search of this type of information? I feel so guilty, but I can't help it !!!
My wife is also 82 and in the late stages of PDD I am her carer 24/7 but with regard to life expectancy our practise nurse has warned me that it could be anytime. A few weeks ago a well known author wrote in the Times about her husband who had PDD, she had longed for him to be taken and end his pain. But he was cared for 24/7 by two full time nurses which very few of us can afford.
Just when I think I have heard the saddest tale up comes another , I feel so desperately sad for you its almost like love hate and must be horrible for you in the same situation with Dad now elsewhere in the universe he begged and pleaded with me to take him home to die I had previously promised him I wouldnt allow him to die in a geriatric ward of our local hospital but I HAD NO CHOICE Parkinsons was closing me down and I spent many weeks in hospital myself with first a amazingly savage water infection followed by gall bladder removal then the Duodopa device was fitted which helps me alot my Mother bless her did not make us wait, she fell end June16 and left us 03 07 16 Mam never liked to hang around and even though I could not have helped in any way even if I wanted too I still feel guilty its human nature sweet pea I know if I live to 123yrs I will carry the burden of guilt until I meet up in another place , try listening to the music of Thomas Newman on YOU TUBE his music is so restful it will ease your sadness guaranteed
Can your mum be admitted into a care home? I am sure adult services can assist you and take some responsibility for the decision. I do not judge you but your mum is an elderly frail woman and deserves to be looked after despite her behaviour towards you and your dad. I have many friends who felt guilty at having to pass the responsibility of care to someone else but did so to protect their parents and themselves. There are few of us capable of such a task in those circumstances allow the professional workers to relieve you of this "burden" , be honest with yourself about the reasons you have taken on this role and whether you are able to give your mum the best care. If your mum did not have you to look after her and was no longer able to care for herself she would be placed in a care home. It is unfortunate that people owning their own homes have to sell their property to pay for care home fees as there is often nothing left to leave the children.
No I don't think you are the only one going through this!
We have just been through similar with a parent with vascular dementia, the Alzheimer's society has a much more active forum with a whole section on end of life and I found it greatly comforting to "speak" to others in a similar situation.
Whilstdealing with the grief of losing one parent, we are now faced with aggressively advancing Parkinson's in another.
Parkinsons nurses to be honest have offered extremely limited resource thus far, it seems quite frankly that due to whatever type of Parkinson's our relative has there is little to be done. I too seek info on what to expect and it seems there isn't enough honest information out there. Yes it's awful to hear about it but how can you help, understand and help care And prepare yourself when with each new development you're trying to work out if it's all related, a one off or something else.
Maybe the medical know how just isn't there yet, but to hear more practical experience as a carer / relative would be helpful.
Your post really struck a chord with me, sorry if talking frankly is difficult for some.
Just when I think I have heard the saddest tale up comes another , I feel so desperately sad for you its almost like love hate and must be horrible for you in the same situation with Dad now elsewhere in the universe he begged and pleaded with me to take him home to die I had previously promised him I wouldnt allow him to die in a geriatric ward of our local hospital but I HAD NO CHOICE Parkinsons was closing me down and I spent many weeks in hospital myself with first a amazingly savage water infection followed by gall bladder removal then the Duodopa device was fitted which helps me alot my Mother bless her did not make us wait, she fell end June16 and left us 03 07 16 Mam never liked to hang around and even though I could not have helped in any way even if I wanted too I still feel guilty its human nature sweet pea I know if I live to 123yrs I will carry the burden of guilt until I meet up in another place , try listening to the music of Thomas Newman on YOU TUBE his music is so restful it will ease your sadness guaranteed