Confused Fiancé Anthea (not her real name) wrote this during the week:
I am a 43 yr.-old woman with no health issues. I met a man age 53 (online) that I fell in love with only later to find out that he was in Stage 4 of 5 stages of diabetes Type 1 (brittle). I don’t know much of the jargon but his kidneys are functioning at 12% (in Sept 2013 it was 14%) and his Creatinine number is 9. He hid his illness (the extent of it) very well for a while…
I reside in London and he still resides on the Paris with anticipation of moving to London soon. My problem is that he is everything I want in a man minus the diabetes. I am so afraid that I will immediately become a nurse instead of a wife if we marry. I noticed that he has become so irritable and angry a lot and he stays cold all the time even when it is rather warm in the house (and I am very cold natured).
I am trying to find out as much information on this disease, but I am having a hard time finding “real” feelings of persons that have just began dialysis and the “real” impact it has on the spouse. I am so afraid that I am tempted to call off the wedding. I do not want to be selfish, but I didn’t ask to sign up for this!! I am a true believer in God but based on my fiancé’s angry outburst, the fear I carry, and the enormous load I will have to bear, I wonder if in fact I can go through with this marriage.
I realize that you can’t tell me what to do, but I was hoping you could give me real insight on what to expect if I do marry him and his kidneys fail. I love traveling, but it seems that those things will be few and far between. I worry that maybe his sugar will drop while I’m at work and he is cooking and he burns down the house. Or maybe his sugar will drop while he is outside mowing the lawn and he falls out. I will be constantly worrying like a mother (which I am not).
Please direct me to someone I can talk to or who is experiencing some or all of my anxieties.
Thank you for your time
What will life be like when my spouse/significant other goes onto dialysis? Will it involve sacrifices? Will my role change from lover to carer? These are the big questions for everyone whose life partner is facing dialysis.
I have some idea, but for the real story, the best people to answer are the partners of people who are on dialysis right now. So to get the ball rolling, I asked my wife, Julie. We have been a dialysis tag team for over 18 years, so who better? Here’s what she said:
Hi Anthea. Of course life with Greg on dialysis is different to when we were both healthy and had been together for more than 20 years. Once Greg went onto dialysis our life was not so free and easy; things became a little more restricted. It took us a while to get used to the dialysis routine and to readjust our lives to include dialysis time. But we did.
I think that our relationship was the key. I read a great book a while ago by Gary Chapman: The Five Love Languages: The Secret to Love that Lasts. He identified five ways in which people say they love someone: spending quality time together, speaking words of affirmation, giving and receiving gifts, performing acts of service and physical touch. We still do all of these things; dialysis became just another element in the relationship.
The real adjustment was to our attitude. From the outset, I have never thought of myself as being married to a dialysis patient (I am definitely not a carer!). We are equal partners: Greg is simply on dialysis and we live our life with that as part of the mix.
That is not to say that we don’t make allowances. When we travel or socialise, we absolutely need to do a little more planning: we take the dialysis routine into account; we find a dialysis centre close to where we are going, and arrange sessions and travel time times around dialysis. But that doesn’t stop us travelling. The same with social activities: I know what time of the day and the week are good times and bad for socialising, and arrange things accordingly.
We focus on what we can do rather than on what we want to do. We make the most of the moment, with small breaks: coffee every Saturday after dialysis; a 1-2 hr drive to a country town for shopping, a tour, and a meal; an afternoon movie or a show. Us time.
With regards or worrying about his health, I do have an underlying level of anxiety. Not about the big dramas, which usually come with plenty of warning, but the little worries like if he is late home, I tend to panic more quickly, or sometimes I overcompensate.
So Anthea, your life together will be different than the one you imagined before you found out about the diabetes and the dialysis, but that doesn’t mean you will become a carer or a mother. It all depends on the relationship between you and your man. Maybe that is the point: I can’t tell you what to do, but I know it takes time to get to know each other and to develop a strong relationship. Getting married and coming to terms with his health problems at the same time could be very challenging. (In the near future, I would also have a long discussion with your man about why he took so long to tell you about his health issues.)
I hope this helps Anthea.
I look forward to the comments and thoughts from for other spouses/partners!