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Topic Apathy... Go to previous topic Go to next topic Go to higher level

By makrivah On 2017.01.11 19:42
Compared to the situations some of you are dealing with, my current frustration seems trivial. A..P..A..T..H..Y

My PWP has absolutely zero interest in anything. He doesn't like to talk, but then he doesn't go anywhere, do anything, has no hobbies, doesn't read, doesn't call friends (for that matter they don't call him), etc etc etc... so what on earth would he talk about?

He says he is content to sit in his recliner and watch tv/sleep/nap 20 hours a day (he sleeps 4 hours in bed). He has a pattern. The shows he prefers are formula plots with familiar and limited cast (for example, Law and Order SVU, NCIS, Blue Bloods). Whether it is first airing or the 100th rerun, he watches. When I mention that the show is a rerun, he says he hasn't seen it. He doesn't remember he saw it just yesterday.

Like I said, it's trivial compared to other PD issues, but this buries companionship, erodes his mental acuity, smothers fun, crushes my patience...I could go on and on. So I just keep trudging along doing it all, every day all day today and every day in the future.

Ok, enough of my self-pity party.

By flowers12 On 2017.01.11 20:59
I know only too well what your faced with. Westerns, westerns, westerns, all night long and car shows most of the day. I try to talk to him but he never answers unless I stand in front of him and block the TV and tell him to look at me. Then maybe I'll get a yes or no, maybe. I feel like I'm talking to the wall and it gets so frustrating. I've been trying to just walk away and saying let me know what you need.

We all have the same frustrations in one way or the other. I'm about to go crazy with the constant neediness. Sometimes he just wants me to stand there and hold his hand and doesn't need or want anything. In the middle of the night besides every two hours me getting him up to pee he sometimes babbles on and on about delusions of having to supervise his crew.

Oh how I pray and wish there could be a cure or at least a way to bring our honey's back to be able to communicate with us again. We can do this, we can do this, we can do this. If it wasn't for this forum I think I would have lost my mind by now. Yes, it's good to just commiserate and send hugs and prayers.

By triciahaha On 2017.01.28 09:07
I too am faced with this same problem, and it has broken my heart, crippled my soul and destroyed our marriage. My husband simply doesn't care about anything. We've been to see the PCP as well as the neurologist, and got a referral to the psychiatrist, who prescribed some antidepressants and sent him along. It hasn't helped. Next stop is the eval by the neuropsych, but I don't hold out much hope.
We've only been married 6 years, and I'm ready to move into the guest room. I just don't understand any of this.

By VioletV On 2017.01.28 13:53
About the apathy - These articles arehelpful, I think.

What I have learned is that the apathy comes from changes in "the frontal subcortical systems such as the anterior cingulate-mesial frontal cortex that are thought to be involved in apathy". The person himself/herself is not troubled by the apathy since the part of the brain that generates feelings of interest and motivation are numbed. So they can't find interest.

These researchers say that this makes it important to distinguish depression from Parkinson's apathy. And anti-depressants won't really help.

The authors also say: "Patients themselves generally do not complain of apathy because, by definition, they do not care and are comfortable not engaging in many activities," she wrote. "It is likely that the patients themselves may not have strong feelings about whether or not a medication is indicated to motivate them."

All of which does not count for a hill of beans when it comes to being the other half of a Parkinson's couple. But since our partners don't care, because they can't care, I think we have to treat this as a symptom that is not changeable with current medications or interventions (to my knowledge). I have made my own peace with doing things on my own -- simple ones like going for a walk, bigger ones like visiting friends and even occasional long ones like taking a 4 day mini-vacation. Our marriage as a marriage is just gone. And I hate that.

By bksquared On 2017.01.29 16:26
The emotional and physical pain of being a PD caregiver is overwhelming. The other day I told someone, "I am a widow but the body isn't cold." My best moments in a day are when I am away from him. Fortunately I have been able to hire help for 3 days a week so I do get away. My husband, friend, and lover died 5 years ago when PD invaded his body. The shell of a man I give care to no longer is the person I married. I am a caregiver not a wife. I now call my life "Ground Hog Day." Any of you remember the movie? Each day is a repeat of the last, but something always goes awry. Unlike the movie - there will never be a happy ending. The last day of his life will close the book on this story. I will move on and write a new book for I have already grieved my loss.

By LC On 2017.01.30 09:27
Thank you for putting into words exactly the way I feel.

By umajane On 2017.02.01 12:37
As a new widow of 7 months I so agree with the last few posts. My marriage died 5 years ago and I became the caregiver.
Everyone asks me how I am doing now.
I have to say I am doing very well. We are both free of this horrible disease.
I felt like I was in prison for years. I took great care of my husband, he stayed home, had wonderful caregivers and I did everything I could do to make him smile, take him places and be the best I could be for him.
Now I am planning and living my life.. Of course I wish PD never came into our lives but it did and we handled it.
Now it's my turn and I have no guilt about this new chapter in my life.
I'm 77, my hubby was 76 and going on is difficult but just fine.

By makrivah On 2017.02.02 08:51
Everyone's honesty is overwhelming. May each of us find some joy in our lives in spite of dealing with the havoc of PD.

By carman96 On 2017.02.02 17:33
My husband watches TV all day. He would probably like to go places but his delusions drive me nuts. For a couple days last week he was insisting he left his boat tied to the dock at a lake that has 10 feet of snow. He kept wanting to go get it. He even got up at 1:00 in the morning wanting to get it. Today he wants to go buy a Harley. In the rain.
I haven't had a rational conversation with my husband for years. It's so sad.
Luckily I do have some help and can get away from the house for awhile.
I wonder how many more years I can live like this. I want to keep him at home as long as humanly possible.
Jane, glad you are doing well, you deserve it!

By BFB On 2018.03.23 09:52
my heart goes out to everyone here

By Lynn03 On 2018.03.24 10:32
It is hard to know that so many people are living with a PWP who has this apathy. Other than here, I have not found people who understand how incredibly life changing this particular manifestation of the disease is for the life of the caregiver partner. While we were never the most romantic of partners, we could at least enjoy a good road trip. The last time I took him on vacation, I spent the majority of time walking alone with my dog while he watched television.

Looking back, I know this apathy has been changing our lives for a long time. It was hard to describe and hard to live with. Fortunately, in my case, there are still a couple of things that can get him out. He will still attend funerals with his friends with military backgrounds to help with funeral rites. He still gets season tickets to the local college basketball team and follows their progress. But TV is the main hobby and, just as others have mentioned, he has his routine favorites. The repetition starts to grate my nerves. There are no shared interests in shows or movies, etc. for us.

I have had more peace over the last couple of months coming to terms with this as symptom of the disorder. I am at least less frustrated with him as a person and more settled into simply using other spaces in the house to do things for my creative side. I know it is necessary for my health that I keep some vibrant interests beyond work and housekeeping.

Thank you for encouraging one another and being the safe place to find understanding for the things that can be incredibly difficult to communicate to others.

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