My dad was diagnosed with Parkinson’s about six years ago. My parents are still young (70 and 67). My mom cares for my dad but he won’t help himself and is running my mom ragged. He doesn’t follow any of his doctors advice apart from medication. He doesn’t do the physio exercises, he doesn’t do what the psychiatrist recommends, my sister and I have provided all the research and info we can find for him to read, but he doesn’t. My sister offered to take him to a Parkinson’s support group but he won’t go because he doesn’t want to listen to other people’s problems. He’s allowed this disease to take him over.
The observations I’ve made is that he’s learned to manipulate situations. If there’s something he doesn’t want to do or talk about, all of a sudden he doesn’t feel well. For example, I bought him a day timer to schedule his days and work activities into it so he’s not so dependent on my mom (suggested by his psychiatrist). He got upset, said he wasn’t feeling well and we never did discuss it again. Or, my parents have a cabin at a nearby lake. If there’s work that needs to be done (trimming trees, etc), he doesn’t feel well and my mom has to do it on her own or find someone to help her. However, if she suggests
going fishing on the lake, he can last all day without issue.
My sister lives in the same town as them but has two young children and I live 2.5 hours away. My mom can’t take much more and I don’t know how to help.
At this point all I can think of is outing him to his doctors at his next appointments but I’d rather not do that. Does anyone have any suggestions?
One Wife/Carer in our extended family was helped a lot by a therapist. While the Dementia could not be cured, having someone to talk to, looking at it differently & discussing new strategies was very helpful. She realised she could not really change him - only her reactions.
My local PD org says this;
"Although Parkinson’s is classified as a movement disorder, it can affect people in different ways. Sometimes the emotional changes can be more troublesome than the motor changes, and can have a bigger impact on the day-to-day life of someone living with Parkinson’s.
Emotional changes that may be experienced include:
Anxiety and Depression
Stress
Apathy"
Apathy may well be part of this picture.
When you say she can't take much more (I'm the last person who would blame her) - what is she most struggling with? Does she get any respite breaks?
Avoid saying anything that suggests to your father that he is to blame for the impact that the disease is having on him. E.g. that he's "allowed" this disease to take him over. That he has learned to manipulate situations. That he won't help himself.
Only people who are living with Parkinson's themselves are allowed to say things like that.
When you say "outing" him to his doctors, in your place I certainly would ask the doctor to address the issue of mental and emotional wellbeing, and I certainly would report non-compliance with strategies to date, but I would not be making any suggestions about how.
How does your father get on with his doctor face to face?
Does your father have any close male relatives or friends?
That's exactly what should happen.
Did you know that something like 40% of caregivers die before the person that they are caring for die? Your mom is in danger of being a statistic if something doesn't change.
Encourage her to put him in a facility, he doesn't want to do anything and just let the disease take his life, that is his choice, but it not acceptable that he is taking everyone else's life. Let him know that he has made his choice and these are the consequences and here is you alls choice.
thank you for taking your time to respond. You’ll never know how much I appreciate it.
Doctors (or at keast most if them) know how to address the family's concerns without "humiliating" the patient.
I never got involved in my Dads care unless he needed a ride to a doctor where Mom was not comfortable driving to. His care was between him and Mom. She went with him to Dr visits and had no problem telling the doctor Dad was not doing what he needed to. You should not be involved. Mom is going to need to speak up. But realize, you can inform the doctors but they can't make Dad do what he needs to either. They actually can drop him as a patient because he doesn't follow Drs orders.
Mom needs to set boundries. What she is willing and not willing to do. If he can do it, then he should do it. If he won't then he doesn't get it. Your Dad doesn't seem that bad that Mom can't do some things on her own. My Mom had her Church and some lady friends she went to lunch with and did some concerts with. Your Dad is choosing his life, Mom doesn't need to subject herself to it.
I am with Willie, Dad has made his choices you need to worry about Mom. She needs to make Dad aware that she doesn't like his choices but not to expect her to stop living her life. You are not going to change Dad and trying to is fruitless. I had a friend who had a DH with a bad heart. She would hollar at him about his diet and smoking, etc. She had to finally say "its ur life if u want to kill yourself do it."
It is really nice that Mom has her daughters to be there for her and Dad. But, Dad may bulk at too many people telling him what to do. Maybe approach it as his noncompliance makes it harder on Mom. He may not care but she and you love him. Parkinson's is not a death sentence but a change in life. The more he does for himself the better he will be. Remember, it is a neurological disorder so the brain is effected.
See All Answers