My husband is 14 years into Parkinson's. I think he is Stage 5 - has most of the symptoms. He has absconded mentally from our relationship. He does not take responsibility for his condition or anything else much, doesn't exercise as he should, doesn't attend speech and therapy sessions. I find the apathy really hard to deal with. Every day is the same, when I get home from work and as if he has done certain tasks which I asked him to do I get "no not yet". I want to scream with frustration. Over the last month we have had a serious decline in mobility and I am unable to lift him. His personal hygiene is deteriorating. He is becoming incontinent, not every day but about twice a week I have to wash clothes which he has wet. He cannot handle any stress and when he is stressed he goes into spasms and can't move. Last night we flew back from visiting my brother in Texas (my first holiday in 6 years and I am still working to support us - the holiday was horrible dealing with his problems). He had lost his wallet in Dallas airport, when we arrived at our destination he could not remember having lost it nor that we had been away, didn't know where he was and went into a total anxiety fit. I had to try to calm him down all the way home in the cab telling him he was safe and on the way home. He wakes me up around 3.30 or 4 am every day to help him to the toilet because he finds it difficult to walk. I have to get up at 6 am to work and do a 30km commute each way in heavy traffic. I am always tired, angry and frustrated and don't even like the person I am becoming.
The scary thing is that if we are going to do something he likes, like going out to listen to music, there is nothing wrong with him, he walks quite normally and is ready before me and will just go out to the car. Drives me nuts because I have to wait for him all the time when we have to go to doctors appointments, etc., or if I have to be somewhere. I'm not sure what I'm dealing with here besides the Parkinsons. Any suggestions please? Also I am afraid to leave him alone because if he's having a bad day and falls, there is no one to pick him up.
"Stage 5 is the most advanced stage of Parkinson’s disease. Advanced stiffness in the legs can also cause freezing upon standing, making it impossible to stand or walk. People in this stage require wheelchairs, and they’re often unable to stand on their own without falling. Around-the-clock assistance is required to prevent falls.
Up to 30 percent of people at stage 4 and 5 experience confusion, hallucinations, and delusions. Hallucinations occur when you see things that aren’t there. Delusions happen when you believe things that aren’t true, even when you have been presented with evidence that your belief is wrong.since he sounds much more able to function than that." (healthline.com)
I urge you to speak to his doctors about your concerns and to join a local Parkinson's support group to help you compare notes and find resources available in your community.
Jamie
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