Hello all, does anybody here have a spouse or significant other or partner etc. that just doesn’t understand your PD, who just doesn’t get it and what all you are going through no matter how much you try to explain it because we all know that it can be very difficult to describe because of all the nonsense we have to put up with having this disease! Any advice. Thanks much.
Un-understanding spouse?: Hello all, does... - Cure Parkinson's
Un-understanding spouse?
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Kt088
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It's very difficult for someone else to understand. Just try your best and forget the rest. On the other hand having someone who understands must truly be a blessing. Best wishes.peace
In attempting to respond to this, the question that comes up for me is to what extent is your partner supportive?
I receive a good deal of support in ways such as all the shopping and errand running, and much of the housework, etc. is covered, these are things I don’t have to worry about, my spouse does it all, I really shouldn’t complain. I just wish there was more emotional support and more attention paid to the medications I take and when I take them and all the numerous other things I have to do just to get through the day. It’s frustrating when you feel alone even though you are not.
The most important thing is that your partner is dedicated to helping you and shows it on a daily basis. Something to be grateful for because not everyone has that.
It is natural to want all of our needs be satisfied by our one partner. Life is not that simple – only rarely is a single person able to satisfy every one of our needs. There are plenty of sources of emotional support for Parkinson's. One is posting here, another is the regular Zoom group being facilitated by MBAnderson for members of the site. Here is a link to his posting:
healthunlocked.com/parkinso....
If you are not already receiving his emails, send him a message and ask to be included on his email list. Nobody understands Parkinson's as well as we PWP.
I think you hit the nail on the head when you stated you feel alone even though you are not. As a caregiver for my late husband that was exactly how I felt and I can imagine your spouse feels the same. Open lines of communication may be the key.
You know on this one I think that it can be more difficult for the spouse than you may perceive. For your part, the best thing to do is to do as much as you can, and forgive the rest . Meet the spouse halfway as much as you can. it is easy for that spouse to feel like their own issues legitimate themselves. May be left behind with the spotlight on yourself. Be kind, be empathic, support, help, moral help, and especially appreciation is not supposed to be a one-way street. How often do you take time to express your gratitude, appreciation, identification with your spouses frustration, and a little sympathy? A little goes a long way but it is a frequent need no less than your needs that are special to this difficult disease, and I wouldn't call it nonsense, your symptoms are real, they just need to be acknowledged and accepted as part of your picture. You know maybe your issues and symptoms may be more troubling to her than you realize... For instance, what does she have ahead to look forward to in the future? Improvement? Relief? And end to this someday when things get better?
Maybe you can count yourself lucky that you don't have a brain tumor or head neck tumors or nasal pharyngeal tumors that killed my daughter at an early age, after 20 years of surgery, struggle, chemo, and immune disorders due to the surgery. Imagine how it could be worse, hard as that might be, because the future prospect is pretty bleak for your spouse; it indeed will be worse for your spouse. Take a deep breath, develop patients, develop the long view, and think how lucky you may be... and then don't forget to actually express that to her him whoever on a regular basis.
Also, it may definitely be time for a bit of professional counseling for you both but especially for him. there's little more you can do to make it easier on him really, and he needs to get the idea that sometimes you do have to talk to somebody on your own. And that heart to heart that somebody else mentioned is a good idea, provided you are able to allow him to respond, as he will, or not respond. Starting out with something like "honey, I sometimes worry about YOU...."
It’s very difficult. And it is hard to explain and it varies day by day which I don’t think happens with a lot of illnesses. I feel guilty a lot on the days I don’t feel well and I don’t accomplish as much as I used to. I think he resents having to help out on those days which only makes me more stressed 😩
My spouse makes no concessions at all. He seems to think that because I play tennis I’m actually fine . He doesn’t understand my constant dosage and diet adjustments to enable me to keep playing (and the fear of falling over). It terrifies me that he will be my eventual carer. He has never been to a neurologist appointment with me !
But then he’s always been very self centered so why would me bring unwell change that!!
Sorry for your loss Astra, for it indeed is a loss. Sometimes we wish we would have paid better attention in choosing our spouse in the first place. But that's under the bridge. In your case you may simply just have to assert for yourself a little better, or do what's called passive asserting, and maybe talk to a counselor about how to deal with someone who has become or is naturally self-involved or passive-aggressive, including how to strategically and tactically use the often transactional motivational nature of such persons to balance the scales, since there is not going to be much " meeting of the minds" and so you needn't feel guilty because that's who he is and somehow achieving empathy on his part is never going to be a big expectation for you.
Video of your tennis ?
Sometimes the coach takes one to show us our flaws! Next time I’ll see if I can get a copy. I’m the one standing in a slightly tense looking pose!!Are you feeling a bit better now??
Hi there. I have been married to the love of my life for 38 years and we’ve always been each other’s rock . I was diagnosed with cancer and then my PD over 7 years ago and he’s been there questioning dr ect. 100% behind me. Well.... the past 4 years he’s had some disappointments with work and started drinking and that has become an issue but however I always knew he was there to hold me up. This passed May I found out he was having an affair and I did not see that coming. Talk about my heart broken into pieces and I became some neurotic that I didn’t know. I’m still not sure what he was looking for bc she’s moved on to someone else already and it’s not as if we didn’t have an intimate relationship after all these years as well. He can’t even explain it to me, but it’s changed who I am and the security I always felt was there, is gone. I was getting so upset that my tremors were all over the page and at times I was so stressed I couldn’t breathe. I told myself I will never let someone make me feel that bad ever again. I’m trying to find my way back but my heart will never be the same and that makes me so sad. Just make sure there’s communication. Take care. Karen
Hugs. So sorry to hear this Karen. To be objective it’s hard for both of you either way when there are many challenges Not making excuses for anyone, but only God can be the rock that you need. We are all human and we all have failings. It could be his way of escaping or dealing with stress- only God knows. Let abba be the balm for your heart- One foolish episode does not erase what you shared all those years eventhough it may feel that way. Have the courage to pick up the pieces and build something even stronger through your struggles, together with God. Even this will pass
No Millbrook some things, like broken trust, cannot "pass." That one's an egg you can't uncrack.
I have seen many couples who were able to build a completely new and better marriage- with God at the centre and much prayer. So I agree with Connie about prayer. You cannot uncrack at egg through your own efforts but God can heal and restore 120 fold when you rest in Him
I’m so sorry to hear that Karen, I can only imagine how painful that is. Would he be willing to get some counseling? Prayer as a couple I think can be very powerful, on occasion my husband will pray with me but it’s not often. I saw what a beautiful 50+ years of marriage my parents had and I can still remember hearing them pray together through the wall of my room and I found it so comforting as a young person to listen to. They continued this all through their marriage. Prayer changes things and even if he’s not willing at least for yourself it can be very healing. My sisters husband told her when he was dying of cancer, a couple months before he died that he had been unfaithful with someone he met at the gym. This news rocked her world and made her question everything about him and herself. This happened a few years ago but she is even stronger now with the help of counseling and God’s help. You will be in my prayers Karen, God bless you, Connie
Thank you Connie and everyone. We will get through this. Our love is stronger then someone interfering with it but it will be a process. ❤️ Karen
Perhaps both of you could get a cat or dog together. We had an amazing cat and he was like a therapy cat. Whatever struggles or disappointments we had he was always there- he was intuitive giving love to everyone and to us he seemed to understand every worry or challenge we had. In a way it reduced the emotional burden that each one had. He understood and he comforted and loved us in turn. He passed away last week at 17 years of age and the whole family is grieving for this family member who was selfless. He is irreplaceable in our life’s journey.
I am a guy. Unfortunately, we are wired in a way that makes these sorts of escapades a very strong temptation. Not excusing it, just saying that as you grapple with this situation, understand that we are wired differently.
Whilst I’m not formally religious, a priest said something to me that I’m often reminded of: ‘God’s the only person who will ever really love you. The rest is either just selfishness or lust’. 🤔
• in reply tojeeves19
If God is all you have, then you have all you need! (John 14:8)
Yes I love this response. But what about dogs? If you want true love you can get a dog--Gd's greatest creation!
My spouse has much worse health than I do (she has Lupus and COPD) so I don't get much sympathy. In truth I obsess too much about the PD and I'm afraid I talk about it enough to drive anyone crazy. That is one reason I am so grateful for Health Unlocked and the (much lower quality) groups on facebook.
I got a dog two years ago and it’s worrying just how much the whole family love him. If anything happened to him we’d be grief stricken
Cats can work as well. Love your reply; it made me smile.
Yes definitely we have had
More rows than ever since I was diagnosed she doesn't or doesn't want understan very frustrating
I am sorry to hear your story. And by the looks of it, you are not the only one. I am not in a position to give you advice but I can tell you from my own experience what I’ve learned. After being diagnosed in 2014 my wife couldn’t handle the message. Her whole world fell apart. Whilst on the other hand for me the diagnosis was a wake up call to start living and making the right choices for myself. No compromises, MY health is the most important thing on earth (apart from the lives of my two children of course). Times have been rough and rocky but I am happier than ever before. The god that some people refer to in their comments is in yourself, meaning I found out the value of self love. And that is not egoistic! Nothing in this world is worth compromising your health for. I wish you a lot of strength and self love.
I am sorry to hear your story. And by the looks of it, you are not the only one. I am not in a position to give you advice but I can tell you from my own experience what I’ve learned. After being diagnosed in 2014 my wife couldn’t handle the message. Her whole world fell apart. Whilst on the other hand for me the diagnosis was a wake up call to start living and making the right choices for myself. No compromises, MY health is the most important thing on earth (apart from the lives of my two children of course). Times have been rough and rocky but I am happier than ever before. The god that some people refer to in their comments is in yourself, meaning I found out the value of self love. And that is not egoistic! Nothing in this world is worth compromising your health for. I wish you a lot of strength and self love.
Sorry to hear the sad stories..... but my wife helps me so much , we had a few trials early on in our marriage, from external sources and we learnt to get strong together, that and we are not selfish people
I know what you mean, I'm in the same boat. I have just talked my wife into going to a carers support group, I'm hoping others will be able to explain better than me.
I am writing a book about my experiences with PD and being diagnosed at age 34. My sense is that the people closest to us have trouble separating their knowledge of us enough to get a "clean" perspective of our feelings. I am writing my book as much for myself and people with PD as for those living with us because sometimes our families need to hear about our experience from a stranger to recalibrate their sense of our environment. So a couple of ideas:
1. Have someone else with PD (not a doctor) speak to your husband or ask him to read one of Michael J Fox's memoirs--or read it together and discuss. Make it fun and connective. Laugh together. MJF is great for that.
2. Set up an actual camera or camera phone (make it official) and interview each other, one at a time so you each get total, uninterrupted attention, and talk about PD. Choose some questions in advance that will help you tell each other a story. Think about it as a diary entry for your relationship with the disease over time. Rinse, repeat.
I am a doc filmmaker and I have interviewed hundreds of people over the last decade +. My job is to not interrupt but to help people tell an honest story and to make them believable, interesting characters. You can't do that if you bring your own BS to the table. It's both a humbling and empowering experience.
3. Resentment builds self-fulfilling prophesies. Notice what is going well and liberally apply benefit of the doubt. Then ask for what you want in specific terms. "Support" means many things and people get defensive when criticized. Ask for very specific help not as a critique but as a chance to improve your teamwork as a couple.
I'm no expert but I have been fighting my own PD battles for 12 years. I hope some of this is useful.
K1
I will say something different and probably not understood.
I suggest not taking an effect point of view, but trying to cause and create your life with him of course .
In other words, do not expect to be assisted or understood and proceed causatively in a sphere of influence reduced by the disease.
This consideration alone will make a big difference.
There is a lot of life and strength in us, otherwise we would not be here on HU PM but on FB . 😀
It’s likely really difficult for both of you. I find that after 14 years, I don’t feel that my husband has empathy for me for all the things I’ve done to keep him going with Parkinson’s either, and how much it’s affected both of our lives. This is a marathon, and you will each have your own challenges, but try to be in it together. My suggestion is to offer her support and thanks for her help as well, and then tell her what you need from her, and what problems you’re having.
My wife found left. Young onset curse......hang in there.
The only thing I can add to what others have said is to be thankful for what you do have. My wife left me, so I've been dealing with most everything myself. Thankfully, I'm tremor-dominant, and I've been able to manage well enough so far, but it hasn't been easy.
As a care spouse, I must tell you that it takes a lot of strength, dedication, and commitment to help your partner with PD-- emotionally and physically exhausting. For the last 3 years I have been bearing on my shoulders all the responsibilities once shared with my husband. Yes, PD turned our lives upside down, but he was the rock once for me, my turn to be his. Forty-eight years of marriage becomes a way of life, hard to change that! At times, I am so frustrated, I am ready to give up on this tough fight, but when he apologizes and tells me that he didn't elect to have PD and that he is the same person I married, I hug him and tell him that I only wish I was the one with PD, not him, as I am a fighter by nature and never give up easily.
Dear Despe, how are things now? I only just saw your post. I also am a care spouse. PD is so tough. Facing double incontinence issues now and feeling the whole world closing in as we become afraid to leave the house. As a career I feel so alone and afraid of the future and my partner is also suffering so much with this illness.
Things are getting tougher and tougher. Hubby has been through a lot, from fracture of his C4, to stent to ulcer of his left leg to prostate surgery. It's been a very difficult journey, and at times, I just want to give up and walk away as it breaks my heart to see his metamorphosis from a multi-talented individual to literally a handicapped one. Good friends and relatives will not shy away, do you have them? Moral support will get us through this journey.
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