Hi bowlingbun, thank you for the recommendation of the book, I will have a look on Amazon. Access courses sound good too.
When you said ‘escape plan’ made me think of the Steve McQueen film The
Great Escape🙋🏻♀️
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Anita_190712 Hi There, Anita.
Your original post rang so many chords with me. I have been caring for my wife for 5 years after she was diagnosed with Parkinsons. The last 18 months have been hell. Like you sleep is interrupted every night, often up to eight times a night (the record is 28 times!). These interruptions are often because my wife wants to go to the loo but can’t get out of bed herself or work out how the toilet works. There is also a lot of false accusations and verbal abuse, which I am ashamed to say has gone both ways. In the last two weeks alone, she has accused me of smoking, sleeping with other women in our bed in front of her and kicking her in the head - all untrue. She frequently sees other children in our room., some of whom are disabled and complains when I don’t help them but of course I can’t help someone who doesn’t exist. She says that my life has been a waste of time and I am nothing but an excuse. She has frequent hallucinations throughout most days, struggles with balance and mobility and her memory is staring to fail. She sometimes thinks she lives in a care home and I am her paid-for carer. We have had perhaps two hours of civil conversations in the last two weeks, We haven’t been out of the house together in that time.
I realised at 3am this morning that I neither have the skills nor the patience to provide the care that my wife needs. When she was originally diagnosed, I knew I would not get my wife back as I knew her. I then thought that I could settle for a life where we could occasionally have glimpses of happiness but I don’t think that is achievable any more. We have two adult sons and they both recognise the issues involved and have told me that they think I may need to make a tough decision sometime soon.
If we stay in the same house then I can’t see how either of us can ever be happy or even reach a level of contentment. I want both of us to be cared for as we move into our 60s but I don’t think I can put up with this life much longer. I read what has been said about respite and it sounds appealing but I worry about the level of resentment I will face if my wife goes into care.
There is some suggestion from a new consultant that the diagnosis may be more complex that simply Parkinsons and this is being investigated. That will take time though and I don’t know how much longer either of us can suffer like this.
Hi seansdad?
My late husband suffered strokes vascular dementia and other health issues.
At one awful time I had accusations thrown at me and verbal aggression. Definitely not the man I married. We had a happy marriage.
He eventually was placed in a nursing home. My family and I had no choice sadly. I have an idea of what you are going through.
Unfortunately Parkinsons sometimes causes Lewy body dementia. I do hope it isn’t but maybe be prepared for the diagnosis. Not knowing is worse in my opinion.
If your wife does have to go into care, you will adjust although it’s very hard. Harsh as it sounds, you will visit, but at least can go home and have some respite from any resentment she may show. Eventually she will adjust.
I really feel for you
@Seansdad It sounds as if the caring situation isn’t working for either of you. I honestly don’t think you can go on as you are and your sons are right - your wife needs to move into a home where she can receive the 24/7 care she now needs. You can then return to being her husband. If you are getting decent sleep then you will be able to cope better with the way the Parkinson’s affects her and this will make time spent with her with on visits or if you take her out easier to manage.
If the consultant diagnoses other conditions and starts other treatments that improve her quality of life that will be a huge bonus, however I don’t think you can carry on as you both are any longer.
There are many of us who have had to make difficult decisions. Your wife NEEDS more care than even the most loving caring husband can give. A TEAM of carers 24/7. I know Parkinson’s UK have information regarding NHS Continuing Healthcare. Talk to them and ask your GP to arrange an assessment asap.