Parkinson's is making my husband less social, what can I do?

13 answers | Last updated: May 15, 2018
Redhatprincess asked...

My husband has never been much of a "people" person but, as his Parkinson's has progressed, he has become less and less social. Just having his adult son and daughter visit at the same time gets him agitated. They have a normal amount of banter back and forth and he seems completely shut off from interacting with them. He can't converse much. I don't feel I can invite my friends to our home since he reacts so negatively. Do we just accept that our social visits have to be outside the home for his sake? Any suggestions for how to handle this?

Expert Answers

Graham A. Glass, MD, is the deputy director of the San Francisco Parkinson's Disease Research, Education, and Clinical Care Center (PADRECC) and an assistant clinical professor of neurology at the University of California, San Francisco (UCSF). He completed a fellowship in movement disorders at the Mayo Clinic.

Patients with Parkinson's disease, such as your husband, often have difficulty feeling overwhelmed in social situations and it is not uncommon for them to shut down or isolate themselves when there are multiple lines of banter to keep up with. Although it is not clear why this is, we suspect that the effects of Parkinson's disease on cognition and mood are involved. Typically when patients' family members report these types of problems, we very carefully assess the patient's mood, looking for problems with depression and anxiety which are both very common in Parkinson's. If either are present, we try to treat them with medications or therapy such as cognitive-behavioral therapy (CBT). In addition, we will look carefully at the patient's memory, as this is often overlooked in Parkinsons. If your husband has difficulty with cognition and processing the conversation quickly, it can be very frustrating to try to keep up with a conversation and to interact in social situations. Sometimes medications can be helpful in this regard too. You may want to refer to the National Parkinson's Foundation's handout entitled Mind, Mood and Memory for further information.

Community Answers

Redhatprincess answered...

Thank you. This is helpful.

Gail 1001 answered...

My mother has also isolated herself over the past few years. She lives with me but doesn't want to be involved in family dinners or any social gatherings. I've actually just signed her up for an adult daycare program to force her to socialize. Since she's been isolating herself, she's declined tremendously. I'm going to try this and see if she tolerates it. It's so sad.

Ladydawn answered...

Do not stop inviting people over. Despite the negativity and apathy, your husband does not need isolation. Moreover, YOU do not need to be separated from social interaction - that can be so dangerous for a caregiver.

It is very painful for many PwPs to follow conversation, to do the requsite social multi-tasking. Keep gatherings small but do not stop having them or attending them.

Don't expect or require him to contribute much but do try to bring up topics on which you know he has something to say. Don't complete his sentences but be prepared to prompt occasionally.

We have dogs and cats who interact well with each other but there is no question that the dogs really need the socialization of outside dogs to feel like vital dogs. They just bark until they have established the parameters. Why should it be any different for your husband.

When he objects to social gatherings or even drop-in visits, explain that he is important to these people, always has been and always will be. You can further explain that they like to be in his presence and they need his tolerance and acceptance.

From time to time remind the kids (perhaps a pre-set signal)to slow things down enough so that he can follow.

Consider PD counseling if possible. He gets tense, anxious and depressed by his situation. He may need breathing exercises to help him relax in public situations. Just the simple breathe in slowly through the nose, hold and feel the relaxation begin to flow throughout the body, slowy exhale. Repeat. That's one you can do anywhere.

Just remember that what he feels now is not what he felt before PD. In his case, his identity has changed as has the way he views the world around him. He may be having a problem with that imbalance.

Claro26 answered...

You are all looking too hard. It is simple. We are embarrased. We are not who we were. I can even be mde to feel freakish because of my state. People dont wait while i finish my sentence. dont under stand when I cant sit at the table for 3 hrs i need to stand up ,maybe take a little walk I struggle to get my chair close enough to the table. etc Please dont exascerbate my problem by drawing attention to my plight just be aware and discreetly assist. I dont like not being as I was and further drawing attention is a killer. "he maybe having a problem with that imbalance" Wow what an understatement. I have written 4 poems on how I feel Maybe you would like to read them

Sopher's mom answered...

Thank you all for your stories and suggestions. Claro26, what a helpful thing to have your point of view. My husband feels the same--even when he IS trying to be social, people just talk over him or simply don't listen or try to understand his sometimes hard-to-hear comments. No wonder the PD sufferer just gives up; it would be like being rejected over and over. My husband had a "militant" speech therapist who insisted that her clients come up with some non-verbal signals--hand wave, etc.--to let people know they are NOT done talking and would like some accomodation to be able to stay in the conversational game. And that this needs to be enforced--tactfully--by those hosting the gathering. As a caregiver I need to remember that is one of my responsibilities and have also suggested to our kids and family members that they be aware of this.

Casey or k2 answered...

OK I am new to all of this. I got a email, clicked and landed here in the Twilight Zone. I guess this is a site for caregivers only? I say that because only one answer seems to come from someone in the "know". DX 40 / Now 57. I used to go to a chat room where we could get together and "talk". Then the site was upgraded to have avatars and the like which I could not figure out so I am a little lost. If someone could point me in the right direction, I would appreciate it. As far as your topic goes, I can only tell you how I feel. Having people around me in motion is totally disorientating. I would equate this feeling to a caregiver as a diver in the middle of a school of fish. You lose perspective to where you physically are in space. Another example: is a pilot flying becomes disoriented and flies up into the ground. The same feeling can happen to me with one person. I have to lay down when the maid is here. She moves so fast I get well... sort of sea sick. I have to isolate myself. I have found that if I go to a party, I have to sit with my back to the wall and a table in front of me. I have my space that is mine and is not going to move. I can enjoy others opening gifts and playing games while talking to one person at a time next to me, not across the table blocking the view. I cannot get up to get a drink or anything else I just ask for what I need. Following multiple conversations is lost on me. Banter I can never follow. What works is more of a story teller format. One person tells a joke and people all comment on that joke. The next tells a story etc.. .Bottom line folks: I cannot change. You must accommodate or do it without me. I am cool with either.

Ladydawn answered...

Casey or K2, I assume you used to join in the forums on "Patients Like Me" where most of the folks are patients, although some of us are caregivers. My husband was a member of PLM a few years before I joined but he has been isolating himself from even online socialization for the past year or so.

I think it does caregivers good to hear your perspective on things.

It is one thing to hear a spouse or parent tell you about what they experience but to have an impartial party who knows first hand, who can explain their perception of the PD world from the inside out, that is more than helpful, it is a wake up call.

You've given us a serious lesson on the slowed reaction time, the slower thought process, the difficulty to multitask. These are part of non-motor symptoms which are so much more difficult to comprehend.

I'm saving the link to this comment section because I think I will need to read it everyday until it is not just understood but until I really get it.

Thank you so much.

Casey or k2 answered...

Lady Dawn I will try the website in a couple of weeks. Thanks! I am packing to go to my sisters house in Alaska. I cannot take this heat in Houston, TX. I may stay longer! When I chatted I was the learner for the first decade. Now after 17 years of this (**&(,, I feel I can give back. All my life I have had health issues so I am really tuned into my body (I knew the second I was pregnant and with PD I knew but I thought oh God now what). Couple that with the fact I was a manager/system designer in a pervious life (you adapt or die) gives me a different perspective when thinking outside of the box. You seem knowledgeable and looking for input from the dark side. If I could give one new penny (of an idea) to help someone that would make my day. Another thing you may want to try is "talking" to people that have other neurological disorders. We have a lot of things in common going-on especially psychologically. There are like a zillion things go on and you have this blob you are trying to help. All you can do is try different things and see what happens. I hope I can give you some pennies before I become a total blob.

Ladydawn answered...

Bon Voyage Casey or K2, Check your luggage for stowaway neighbors. Fact is, you've already provided may pennies worth of insight. I'm trying to listen to my husband and to change my internal rhythm expectations of the give and take. With your words drumming at my hidden layer of humanity, I realized that it actually took my husband a full 30-45 seconds to respond in a serious conversation today. Guess what, the world didn't stop turning and the positive reinforcement of following his pace is important to his self image. The information is still in there, it just takes the wiring longer. Stay Cool

Tkkelly answered...

My husband and I both suffer from PD. It is difficult to be social, because we get either looks of pity, which we hate, or we get stared at, which is incredibly rude. We go to church, where we're accepted unconditionally, and I still work. My husband, however, lost his driver license about 9 months ago so it's even more difficult for him.

Toomanylosses answered...

my wife has advanced pd . She is in assisted care now. She is 72. I am 71.. She isn't doing very well. Am I a horrible man for wanting female companion? Just to have someone to go out & have dinner & talk.

Toomanylosses answered...

I tried so hard to care for her at home ,but just could not do it any longer .Our daughter finally insisted that she should go to assisted care