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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?

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Just one more thing, Dementia does go hand in hand with Parkinson's. So Dad could be or eventually be suffering from it. Reasoning, being able to process what is being said and comprehension ability happens early in Dementia.

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.
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Reply to JoAnn29
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There are a lot of virtual Parkinson's support groups right now. Contact any of the Parkinson's organizations to f ind out about them. I also recommend Rock Steady Boxing. Participants swear by its benefits.
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Reply to vegaslady
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Is it difficult for your mother to find friends or hire services for any help she needs?

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?
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Reply to Countrymouse
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Thank you to all of you who have responded. For insight to our family dynamic, my mom is the dominant one in the family but my sister and I have been raised to be strong women. In serious situations, our family works as a foursome. Yes, this is between my parents to decide his care but it’s also viewed that, as their children, it’s our responsibility to ensure both are cared for. If our mother hadn’t followed post-op instructions after her operations to make our dad’s life better, we’d have stepped in. This is the same situation. I’m not asking my dad to change his personality; I’m asking him to follow doctor instructions. I don’t think that’s a lot to ask.

As our mom lives it daily, she doesn’t see how the little things have built up to big things.

We've had discussions with our mom, as well, about joining a support group and she felt we were her support. I told her that we aren’t good enough and aren’t objective enough. As a result, she’s going to join a group once COVID restrictions are lifted.

At this point, a last ditch effort has to be made for my dad for both of
their sakes. I’ve attended his appointments in the past (at my mom’s request) and I’ll be attending his next appointments in November. I’m going to take everyone’s advice on board to create a strategy for a type of intervention with his health care providers to drive home the need for him to follow instruction.

Thank you to everyone for taking your time to answer my question. You’ve given me a lot to think about and I know where I’ll be coming for future advice!

Blessings to you all.
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Beatty Aug 20, 2020
"I’m asking him to follow doctor instructions. I don’t think that’s a lot to ask".

Many people do struggle with this due to many causes - eg brain changes due to damage by stroke, TIA, dementia or brain chemical changes like in depression, apathy.

Wth PD, while the physical shaking is visible, many other brain changes are not.

As this is a progressive disease it is a huge change, to absorb & adapt - for the whole family. Of course it would be better if Dad could stay as independant as he can for as long as he can, but expectations will need to keep changing to meet the newest version of normal.
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Look for a Rock Steady class in your dad's area. It's an exercise program, here it's 3x per week for an hour. It's specifically for people with PD. It's a two-fer - my husband got exercise with others, which made it more enjoyable. It was also a sort of support group for us both -- he was able to be with other men who also had the daily trials of PD, and I met wives who all supported each other. It increase his mobility and balance --- I can't say enough about how life changing this program is.
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LoopyLoo Aug 19, 2020
If the Dad is not interested in doing anything and doesn’t care about taking care of himself, he’s not going to go to a class.
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I have a classmate, now 71, who has suffered with Parkinsons for years. He is now using a walker and its hard to understand him but he keeps active and always has. We lost a Church member at the age of 89 who too kept busy.

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."
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Reply to JoAnn29
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It sounds as though your dad is in early stages of Parkinson's, at least physically, but as Beatty notes, apathy and depression are common in Parkinson's. I suspect that the your Dad's pre-existing personality and your parents' relationship may also be playing a role. For example, if a person is used to having his/her spouse wait on them, this will only be exacerbated when illness strikes. If the person was very independent and also pitched in their share in running the household pre-Parkinson's, they may try to do as much as they can for themslves and be motivated to exercise, follow Dr.'s orders, etc. Parkinson's definitely slows down everything and makes it more difficult to do, so I'm sure the temptation for the person is to ask for help and/or for the caregiver to help just to ease things and speed up whatever needs to be done (e.g., dressing, getting a snack from the refrigerator). Exercise is one of the msot important things a person with PD can do--not just for the physial aspect but also mental/psychological. Parkinson's is progressive, but progression can be slowed--it's truly a situation of "use it or lose it."
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Reply to newbiewife
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I would have a talk to Dad's Doctor (or even better, a specialist in PD). Take both parents if you can, or just Mom for advice if Dad won't go.

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.
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Reply to Beatty
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Do you accompany him to doc appointments, or does mom? All you need to do is type up a list of your concerns and hand it to the receptionist when you check in.

Doctors (or at keast most if them) know how to address the family's concerns without "humiliating" the patient.
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Reply to BarbBrooklyn
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I think you need to focus on supporting your mother and encouraging her to set boundaries and seek respite. Although your father won't attend a support group perhaps she could find one for spouses like herself, I imagine there are lots of caregivers out there who could commiserate.
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Beatty Aug 19, 2020
Yes good idea.

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.
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Why would you rather not tell his doctor that he is noncompliant?

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.
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Reply to Isthisrealyreal
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jjna90 Aug 18, 2020
I wouldn’t want to say anything to his doctors because it could be humiliating but saying this aloud and reading your response has made me think twice. I do know the mortality rate for caregivers but my mom will never put him in a facility. I’m thinking some tough love is what’s going to be needed.
thank you for taking your time to respond. You’ll never know how much I appreciate it.
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