My Partner Also Has a Chronic Disease. The CHRONDI Creed Helps Us.
There are quite a few articles that talk about caregivers supporting a person with a chronic illness, and that caregiver is usually the spouse. But what is it like when both people in the relationship have a chronic disease? There is a lot less information out there about this predicament and what people can do under these circumstances to maintain a high quality of life. My partner and I have found that the CHRONDI Creed helps us.
When one partner has a chronic illness, 75 percent of marriages end up in divorce. These couples also suffer high levels of stress and burnout — mental health issues. This has a serious impact on the health of the family.
Writers have offered helpful suggestions on how to limit the negative relationship effects of chronic disease, such as working through frustration and addressing irritability. There are also good sources that provide a literature review of self-care, a review of chronic illness as it overlaps with getting older, and a list of reading materials on caregiving.
This information can be applied to the dueling chronic disease dilemma, but none of these articles accurately articulate the chaos that happens.
When both people in the relationship must deal with their own chronic illness and then be there to help their mate with their issues, chaos ensues.
There is just no way around it – couples argue and fight. It’s made worse when both have a chronic disease, with the accompanying issues and needs that must be met. It’s a swirling storm, and you either decide to travel through it together or you decide to go your separate ways.
We have decided to commit to doing whatever necessary to make the journey easier and healthier for both of us. This is where the CHRONDI Creed comes into play.
Compassion (C-CHRONDI) is the foundation for success: taking the time to hear each other’s needs and respond with a gentle heart. Many of these needs fit into the care demands of disease management (R-CHRONDI), but relationship health must address more than the dueling illnesses.
Couples need to experience times of shared happiness (H-CHRONDI), take walks together embracing nature (N-CHRONDI), and support each other with the development of identities separate from the illness (I-CHRONDI).
There is a plus side to both partners having a chronic illness, which is that both are experiencing loss of function (D-CHRONDI) and both benefit from the support of others beyond the relationship (O-CHRONDI).
We both have agreed to put the CHRONDI Creed in place as an umbrella to help us weather the storms we encounter. It is a shared journey, with each of us taking turns holding the umbrella against the fierce winds.
Our relationship has its rough times — fortunately not that often — but it is filled with mutual interests, love, and a spiritual/soul connection. When the warranty on the body runs out and you can’t get new parts anymore, it is these nonmaterial qualities that bring strength to the relationship. We have always been each other’s best friends, and even in the darkest of times, one of us shows up to hold the umbrella for the other one.
Do you and your partner both have chronic illnesses? Use the comments section below to talk about your experience and your coping strategies.
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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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Comments
Sue
I am still with my husband after 14 years of his PD. He had DBS that resulted in him having a secret 8 month affair.with someone I knew. I was devastated. It was the hardest thing I ever had to do not to leave him then. All I could do iwas try to remember the wonderful 15 years we had had before that. A really close loving marriage. How could I leave him to struggle on alone? Somehow I had to live with what he had done and keep helping him. But I often get angry and frustrated and hate myself for it. I wonder if my patience would have been better if that awful betrayal hadn’t happened . It changed our marriage- but then PD does that in many ways. Anyway I’m here till the end. But sometimes I wonder with all the stress if I will die before hm I hope not as he needs me
Duane
I'm glad that this is being addressed, because this is the predicament I have found myself to be in! It has been very difficult, a rocky road, for both me and my wife. We are coming up on our 50th wedding anniversary, next year, and I'm trying my best to keep it all together, but it's been very challenging! My faith is what sees me through the difficult times! My wife had quadruple heart bypass 25 years ago. Since then, she has had 3 heart attacks, and 5 stents put in. The doctors cannot put any more stents in, they said, two years ago. My wife is in congestive heart failure, stage 3 kidney failure, and has diabetes, where she has to have two insulin shots a day. So, I have been a caregiver for her, for a number of years. I was diagnosed with Parkinson's Disease two years ago, but the neurologist figured I have had it for about 8 to 10 years, based on history and symptoms. We had lived in a small town for many years, and only recently moved to a city, where there were specialists, two years ago. My family doctor, in the small town, had noted that my falls, tremors, and other symptoms occurred, but never put a specific name to why I had the symptoms.
Meanwhile, my wife and I were doing our best to help each other. Once I was diagnosed, and put on Sinemet, it helped a lot with my Parkinson's symptoms. Sometimes, we both forget things and get irritable, which we never used to do. Because of having lack of energy and being overly tired at times, it gets difficult for me, to keep up with household chores, and helping my wife, but somehow we manage. We both have had some advancement of our various ailments, which adds to the frustration. We are both retired, on Medicare. The biggest source of frustration and what has upset us the most, in the last two years; however, is the cost of Insulin for my wife, which tripled, from $165.00, per month prescription for vials, to now $400.00. ( actually, that more than tripled ). My medicine almost doubled in price, under this administration. There is definitely price gouging. This completely messed up our budget, , with us being on a fixed income. This is extremely stressful for my wife, as a heart patient, and for me, as well. We are hoping we last to be able to celebrate our 50th Wedding Anniversaty, but we've had to cancel the party we were planning to have, because of costs! So that's my story. We must persevere, and fight for what's right, and not give up hope!
Dr. C
Very nice response, connects well with the column. Thanks for the post! Compassionate blessings to you and your partner.
Theresa
My marriage is described as "as close as one can get to a fairytale" and then all the diagnosis of chronic illness start.
My husband works and tries to take care of me. His job is stressful enough, police chief. Then he comes home to a hurting wife that sits around and doesn't do things like I used to. When we were first together, the house was always clean, the kids were taken care of and cooking was fun. Now just standing for 10 minutes makes me feel like I'm going to collapse. I can see him pulling away emotionally. Always trying to pretend he loves me as much as he once did. I can see the difference. I worry about my looks. He tells me, you are beautiful, you don't need your hair done or makeup. But them when it isn't done I see him pulling away. My heart breaks and I'm constantly saying I'm so sorry you have to deal with this. He always says it's ok, it's life. But you can see that I'm holding him back. We had dreams of traveling the world together. Now if I'm walking for a long distance I need to sit in a wheelchair. Im not allowed to drive because of blacking out. He is stuck doing almost everything. My heart breaks daily and I see him hurting even though he tells me he is ok. He deserves everything.... I'm keeping him from living... he used to never say anything negative, ever... but now he talks about how "hard" it was over the years dealing with emotions. And I can lay beside him and he doesn't even look at me. It's so hard wanting to give him all of me and I am lost. I don't know how any longer. He deserves a person to give him all of them. I try and fail daily. Sometimes I wish I could just go and stay in an assisted living facility and just let him live. I'm bringing him down. The stress from it all is going to make him sick. God Bless him. He is perfect.
Hagar Kovach
Hello to all of you reaching out in the feeble hopes(right now to me anyway) of figuring out how to get through another day of both my wife and I struggling for over a decade over my cancer issues and her huge amount of back spine hips sciatice bursitis in both hips I can go on and on with the near endless health issues we both have been and still go through.
Ive reached the point I feel Im to the point my trying to help my wife cope with her issues is causing more harm than any good. We’re truly soulmates been bonded at the hips since day we met in 1992. I cannot begin to describe the mountains of life’s problems we’ve faced together.
But now there are more and more issues. Our finances have us headed seriously towards becoming homeless.
I’ve always found the solution to so many crises over the years. But now we’re about out of options and honestly feel its just a matter of time.
With the ability to always find the “way” now seemingly gone. I’ve lost hope and am devastated at for the first time realizing my actions and frustrations are causing me to lash out more and more day afterday I don’t see the way to fix almost any problems big or miniscule they may be.
I truly pray the answers come. For all of you out there dealing with this type of horrible mess we’ve gotten into.
I hope y’all can figure out the paths you can take to come out the other side all good.
I truly can tell the paths Ive been through, have helped us trhough so many roadblocks and flat out cliffs to nowhere. But now. Not a forseeable one to take to see a good safe light at the end of any tunnel I can find
Thank you so very much for having this platform to describe life’s reall struggles.
God bless you all and pray your all going to find your way through your difficult times
Hagar🙏🙏🙏🙏
Dr. C.
Hi Hagar ~ Thank you for your heartfelt comment. If you really feel that you and your wife are having the difficulties you describe, the best course of action I can suggest is to ask for professional help -- through a counselor, your church (if you have one) or through your provider. These are difficult roads to travel and it is not giving in and giving up to ask for someone to light the way and support you and your wife's efforts. I'm a trained clinician and there are many days when it is hard to me to deal with all the medical, cognitive and emotional issues. I understand how hard this is. I sincerely hope that you will find a resource to help.
Many blessings,
Dr. C.