My husband, 53, has been recently diagnosed with Parkinsons. I’m 43. Over the last 5+ years he’s changed significantly. He was never exactly a half full kinda guy but he was strong, independent, active, funny and over the last 5 years he’s disappeared into himself. No smiling, no laughter, a lot of frowning at me. He suffered from anxiety and depression and had regular stomach issues. I tried my best to support him but he turned in on himself and I felt increasingly lonely, unloved and un cared for. I tried to talk to him about it but he either wouldn’t listen or couldn’t hear me. Long story short I started to try and find joy in my life elsewhere through clubs and activities with friends and one of those friendships led to something more. Now, with his Parkinsons diagnosis we know that a lot of those things… the lack of emotion, anxiety, depression, stomach issues were likely symptoms and not something in his control and I’m now racked with guilt at my behaviour. We’re doing couple counselling to try and improve our relationship but after 5 years of feeling unloved I feel like I’m trying to find a spark with a completely different person. I love him but not in the way I did. I feel pretty hopeless about life currently. I don’t want to leave him to face this horrible disease alone, I don’t think he could cope, but I also don’t want to lose the joy I’ve found in my new relationship. I feel incredibly guilty and selfish but I need to find some happiness too or I won’t be any use to him or the family as we face the long road ahead. I simply don’t know what to do.
Hi Silky80, firstly I would like to welcome you to the forum. I think it’s incredibly brave of you to reach out for help and support. Everyone reacts to news in such different ways, there is no right or wrong way of dealing with this information, and both yours and your husbands feelings are valid in this.
I think it’s great that you are trying couple counselling, but you may benefit from having your own counselling to help process and address how you are feeling. We do also have a free helpline where we have a range of dedicated experts that can help our community. You can reach out to them via email: [email protected] or you can call them on 0808 800 0303.
There is no right or wrong answer, and we hope you can find the help and support you need during this time through your counsellor, or through our helpline and our wonderfully supportive community.
Best wishes
Freya
Parkinson’s UK Moderation Team
Hi Silky80,
Wow, that is a dilemma and I do understand your situation totally, however that being said, I honestly see no reason why you should be feeling guilty.
Yes PD does induce some of those symptoms, but certainly not all, and from what you describe he seems to have been doing everything he could to alienate you.
As you state he has only recently been diagnosed with PD, I would presume that would be in the past 6 months or so there is no way, that he had PD for 5 years before it was diagnosed, the hand and other trembling etc would have been too obvious for it not to have been diagnosed.
The fact that you have not mentioned any physical symptoms of PD is also surprising, as that is the basic giveaway.
Anxiety and depression can be caused by any number aspects, has he been tested for Bipolar?
Who diagnosed his Parkinsons?
Perhaps if you gave more info regarding the physical side of things we could get a clearer picture.
Silky - I get it. I’m 28 and my husband age 35 has been diagnosed for a year. I have had to learn to love a new guy because the symptoms make him such a different person. It’s hard and I understand the guilt but I just want to say your feelings are totally valid. I have had some well being sessions which has helped me understand how I feel and also how to deal with certain situations. Could be an option to reach out to your GP and see if something like that is available? Also understand the fact wasn’t diagnosed for a while - my husband was brushed off with anxiety for over a year and GPs were reluctant to give a diagnosis. Then waited another year for neuro appointment. So I understand.
@beachpebble9 Thank you for understanding, that means a lot. I will reach out to the GP and see whether they offer any similar sessions. I’m glad they helped you.