Handling Ups and Downs in Marriage and other relationships

Posted by sandij (Sandi James) @sandij, Tue, May 7 2:31pm

Relationships are challenging even during the best of times. When you or your spouse is experiencing a medical problem, be it physical or mental condition, it adds a whole new dimension to the relationship. What have you found to be problematic in your marriage since your diagnosis, and what are some, if any, solutions that you have found to improve things?

Hi, @sandij – thanks for bringing up the topic here on how medical problems, whether in your own life or the life of your spouse, can add a whole new dimension to the relationship.

I thought that @merpreb @brightwings @loyalone @dorisena @david33 @rkleinsmith might have some input on this topic.

@sandij – if you feel comfortable, will you share about what you may have found problematic in your marriage since a diagnosis you've received, and any solutions you've come to thus far?

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I've been diagnosed with fibromyalgia. About 4 years ago things in my life just started falling apart. At the time I'd been married for just a few years (we both had previous marriages and married each other at age 48). We had just moved into a beautiful new home and I found myself in chronic pain with debilitating fatigue. It's been a real adjustment for my husband as I became less and less willing to do the things that used to bring me joy and that we did together. With the diagnosis brought a combinations of medications that ultimately led to a hospitalization caused by serotonin syndrome (although the doctors would never admit that). For the past several years I have been eliminating medications such as neurontin, tramadol, effexor and ambien. Tapering most, went cold turkey on several, with full blown acute withdrawal and/or PAWS. The ups and downs have wreaked havoc on my entire person, self esteem included. I have an understanding husband but at times I'm sure this is not something that he would have chosen for himself to live with. One of the hardest things for me to handle is the guilt over being so needy and wanting understanding. I wouldn't really wish any of this on anybody but at the same time I wish our spouses could really know the pain that chronic illness and its complications can bring on us. Thanks for reading and I hope for shared stories that will help us to feel connected. We are not alone in this, I know.

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@sandij– Morning Sandi. I understand your guilt. Having to rely on my husband because of my lung cancer and PTSD has certainly been a strain. It's been 22 years since my first cancer. I never wanted to be a burden for anyone, especially not my husband. Each couple has to find their own way through a lot of different things. Physical pain, I find that I can describe it but if another person has never felt "that particular type and severity" of pain before then it's hard for them to grasp how it effects us. Like giving birth. Husbands know it hurts but have no idea how much or what type of pain it is.
My twin had fibromyalgia and she was miserable. I'm sorry that you have to deal with it. What have the doctors advised you to do?

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@sandij I kept your post in my email for the last couple of days. While I wanted to see what others might say, I also wanted to formulate a response to you. This is a very timely post and sometimes I just have to wonder if you all are in my head!
My story is a little bit different. A couple of weeks ago my husband and I celebrated our first anniversary and we are both in our mid-60s. We met in 2015 at a kidney disease support group, so we already had existing medical issues – he being on dialysis and me newly diagnosed with a rare condition. Over the course of our relationship, some of my autoimmune issues have become more prominent and invasive in my daily life, and he received a kidney transplant Oct 2016. It is frustrating for me to not even be able to keep up with him and his energy level! He tries very hard but doesn't understand why some days I have energy and others I just don't. One of the big keys for us, and I have to say that I have no idea if he really understands or hears what I am saying, is that we talk. We talk about everything, how my medical situation affects our marriage, how his post-transplant life is different. It is truthful, it can be painful. Because we really do care about the quality of our relationship. Does it put a strain on it? oh definitely, but we are working on coping mechanisms. Those are important to us and we both agree that as long as we can keep communicating honestly and without judgment from the other person we can go an awful long way.
I hope this helps.
Ginger

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Hello. I find that chronic illness definitely adds stress to relationships. For many of us, the illness is invisible. We look fine on the outside, but suffering on the inside. I do not complain and strive to be as independant as possible. By being this way; it is easy for my husband to forget that I have limitations.

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My husband of 47 yrs was diagnosed w/ALZ, 9 yrs ago, at the age of 69; I was 59. He is still with me at home. We moved to a very active retirement community in central FL, 7 yrs ago. There is a weekly, free respite program he attends for 3 hrs at a local church; monthly I attend a support group w/caregivers at the same time, for 70 mins. I try to exercise in a nearby pool, year round. 5x/wk., for 90 mins., in the early morning, plus play mah-jongg for 3 hrs/wk. We attend weekly neighborhood parties (1 hr) & monthly beach club outings & events w/residents from our former state. We often take naps & play board games (Rummikub, Sequence, Scrabble) 3-4x/wk. He is on 3 meds & 4 supplements. The only surgeries he has had since the diagnosis were on his cataracts & a hernia. We often run errands using the golf cart, which he enjoys alot. He loves sitting on the porch & talking w/neighbors. He walks with a friend weekly for about an hr. Our time apart from each other, even when I'm napping & he is on the porch, helps me remain somewhat sane during this very challenging journey.

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@gznqk5

My husband of 47 yrs was diagnosed w/ALZ, 9 yrs ago, at the age of 69; I was 59. He is still with me at home. We moved to a very active retirement community in central FL, 7 yrs ago. There is a weekly, free respite program he attends for 3 hrs at a local church; monthly I attend a support group w/caregivers at the same time, for 70 mins. I try to exercise in a nearby pool, year round. 5x/wk., for 90 mins., in the early morning, plus play mah-jongg for 3 hrs/wk. We attend weekly neighborhood parties (1 hr) & monthly beach club outings & events w/residents from our former state. We often take naps & play board games (Rummikub, Sequence, Scrabble) 3-4x/wk. He is on 3 meds & 4 supplements. The only surgeries he has had since the diagnosis were on his cataracts & a hernia. We often run errands using the golf cart, which he enjoys alot. He loves sitting on the porch & talking w/neighbors. He walks with a friend weekly for about an hr. Our time apart from each other, even when I'm napping & he is on the porch, helps me remain somewhat sane during this very challenging journey.

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My story is as complicated as my getting diagnosed July 2018, after 20 years of steady weight gain ( average 5 a year )
After trying many diets and unable to exercise ( my husband of 20 years is a physician and very fit for 72 yrs old )
I went from 132 lbs to 206 in that twenty years. Our marriage was terrible by the time I filled out the paper work to hopefully become a patient at Mayo, I didn't tell anyone esp my husband for fear he would put a stop to it….after all I was not exercising and wouldn't ( couldn't ) even go for a walk. So why on earth would I waste the time of these good Doctors.
Well on my last day at Mayo, a lovely endocrinologist ( specialist in metabolism) listens to my story and symptoms. In short order, she called me back after discussing my symptoms with a fellow. Together they feel strongly that perhaps I have an insulinoma.
It was day five and my plane was leaving the next day ( Saturday ). I told the Dr I will come back for further test to prove their suspicions. Seven trips later two huge surgeries I'm a different person. Oh, after my first visit to Mayo just four days later I found out my husband had been having an affair with a psychologist at work.
I'm 65 at the time. So we haven't seen anyone yet….the surgeries were first and foremost on my mind, now I will deal with the next chapter in my life. I did see an attorney to get my affairs in order just days before the second surgery. My husband has professed that he is done with his emotional affair with this married woman and we have been sleeping in the same bed for the past three months. My weight was his excuse for the affair. I lost 35 lbs within a few weeks of the first surgery….I can walk all day, not just to the mail box. I just hosted a huge wedding at our home for my nephew days ago. I'm stronger and happier than I have been in years. I don't know what is next but, because someone finally listened to me I have options…I'm not down for the count.
Thank you Mayo Clinic for taking me as a patient ( not doubt for a simple nodule on my thyroid ).

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@windwalker

Hello. I find that chronic illness definitely adds stress to relationships. For many of us, the illness is invisible. We look fine on the outside, but suffering on the inside. I do not complain and strive to be as independant as possible. By being this way; it is easy for my husband to forget that I have limitations.

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I know what you mean @windwalker. Unless something is very wrong I try and go about my business like any usual day. If find that he thinks that I am so strong that I can handle lots of things. I love him for it but geesh

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@marilyn2525

My story is as complicated as my getting diagnosed July 2018, after 20 years of steady weight gain ( average 5 a year )
After trying many diets and unable to exercise ( my husband of 20 years is a physician and very fit for 72 yrs old )
I went from 132 lbs to 206 in that twenty years. Our marriage was terrible by the time I filled out the paper work to hopefully become a patient at Mayo, I didn't tell anyone esp my husband for fear he would put a stop to it….after all I was not exercising and wouldn't ( couldn't ) even go for a walk. So why on earth would I waste the time of these good Doctors.
Well on my last day at Mayo, a lovely endocrinologist ( specialist in metabolism) listens to my story and symptoms. In short order, she called me back after discussing my symptoms with a fellow. Together they feel strongly that perhaps I have an insulinoma.
It was day five and my plane was leaving the next day ( Saturday ). I told the Dr I will come back for further test to prove their suspicions. Seven trips later two huge surgeries I'm a different person. Oh, after my first visit to Mayo just four days later I found out my husband had been having an affair with a psychologist at work.
I'm 65 at the time. So we haven't seen anyone yet….the surgeries were first and foremost on my mind, now I will deal with the next chapter in my life. I did see an attorney to get my affairs in order just days before the second surgery. My husband has professed that he is done with his emotional affair with this married woman and we have been sleeping in the same bed for the past three months. My weight was his excuse for the affair. I lost 35 lbs within a few weeks of the first surgery….I can walk all day, not just to the mail box. I just hosted a huge wedding at our home for my nephew days ago. I'm stronger and happier than I have been in years. I don't know what is next but, because someone finally listened to me I have options…I'm not down for the count.
Thank you Mayo Clinic for taking me as a patient ( not doubt for a simple nodule on my thyroid ).

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@marilyn2525 the emotional shock on top of all of the physical challenges is a lot to take. You sound like you are a very brave person. Sometimes it takes having someone to just listen to us and validate our concerns to give us the confidence we need to move forward in a positive manner. You have a lot going on and I admire you for not only dealing with it but for sharing your story. It will help others. It helped me today, so thank you.

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@gznqk5

My husband of 47 yrs was diagnosed w/ALZ, 9 yrs ago, at the age of 69; I was 59. He is still with me at home. We moved to a very active retirement community in central FL, 7 yrs ago. There is a weekly, free respite program he attends for 3 hrs at a local church; monthly I attend a support group w/caregivers at the same time, for 70 mins. I try to exercise in a nearby pool, year round. 5x/wk., for 90 mins., in the early morning, plus play mah-jongg for 3 hrs/wk. We attend weekly neighborhood parties (1 hr) & monthly beach club outings & events w/residents from our former state. We often take naps & play board games (Rummikub, Sequence, Scrabble) 3-4x/wk. He is on 3 meds & 4 supplements. The only surgeries he has had since the diagnosis were on his cataracts & a hernia. We often run errands using the golf cart, which he enjoys alot. He loves sitting on the porch & talking w/neighbors. He walks with a friend weekly for about an hr. Our time apart from each other, even when I'm napping & he is on the porch, helps me remain somewhat sane during this very challenging journey.

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@gznqk5 its really important to have the time apart. One of the things I need to learn to do is to spend some of my alone time exercising. It sounds like you and your husband are still enjoying a full life in a great community. I hope that is in my future too!

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@gznqk5

My husband of 47 yrs was diagnosed w/ALZ, 9 yrs ago, at the age of 69; I was 59. He is still with me at home. We moved to a very active retirement community in central FL, 7 yrs ago. There is a weekly, free respite program he attends for 3 hrs at a local church; monthly I attend a support group w/caregivers at the same time, for 70 mins. I try to exercise in a nearby pool, year round. 5x/wk., for 90 mins., in the early morning, plus play mah-jongg for 3 hrs/wk. We attend weekly neighborhood parties (1 hr) & monthly beach club outings & events w/residents from our former state. We often take naps & play board games (Rummikub, Sequence, Scrabble) 3-4x/wk. He is on 3 meds & 4 supplements. The only surgeries he has had since the diagnosis were on his cataracts & a hernia. We often run errands using the golf cart, which he enjoys alot. He loves sitting on the porch & talking w/neighbors. He walks with a friend weekly for about an hr. Our time apart from each other, even when I'm napping & he is on the porch, helps me remain somewhat sane during this very challenging journey.

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@gznqk5– Good morning and welcome to Mayo Connect. I know that care taking and person with memory.problems can be very frustrating. My mom had Parkinson's Disease with memory problems. It sounds as if you have a great place to live that serves both of your needs. This is just fantastic, although I know that no life is ideal, especially with an ill partner.
I absolutely had to get away from my mom, at least once or twice a day. And it mad a world of difference. Thank you for coming aboard and sharing your story. You might also be interested in joining the Brain and nervous symptom group. https://connect.mayoclinic.org/group/brain-and-nerve-diseases/ @lisalucier is the moderator for that group and is excellent.
How are you doing, despite all of your activities?

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I feel this topic is very relevant. Having been married for 64 years and have a husband of 89 years, I know there are a lot of issues that can be discussed to help others deal with the change in the relationship with a spouse Alzheimer's does not give you any instructions on how to deal with mood changes and personality changes of the one you have loved and lived with for so long. We all need a space too vent.

This privacy issue is going too far. If you don't like the topic, just delete. The person sending the message is just needing to vent and know that others out there are experiencing some of the same issues. As for names, do you realize how many people in the US and world may have the same name as you?? As a genealogist, I have found it happen many times and they are not necessarily related. There are no locations named unless the correspondent includes that so don't worry. Just don't visit the list if you feel uncomfortable.

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@merpreb

@gznqk5– Good morning and welcome to Mayo Connect. I know that care taking and person with memory.problems can be very frustrating. My mom had Parkinson's Disease with memory problems. It sounds as if you have a great place to live that serves both of your needs. This is just fantastic, although I know that no life is ideal, especially with an ill partner.
I absolutely had to get away from my mom, at least once or twice a day. And it mad a world of difference. Thank you for coming aboard and sharing your story. You might also be interested in joining the Brain and nervous symptom group. https://connect.mayoclinic.org/group/brain-and-nerve-diseases/ @lisalucier is the moderator for that group and is excellent.
How are you doing, despite all of your activities?

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Thank you for asking, Merry. Like most, I have good & bad days. Some days, we laugh & work together around the house. On "bad" days, my patience & understanding run thin. We may be a couple who must live w/ALZ for 20 yrs (he's in great shape, physically); what a prison sentence! I must remind myself of all the good times we've had & be grateful he is still with me. Caregivers often die before their ill, loved ones. I pray that does not happen, as he then would be placed in a memory care facility with my younger sister as his guardian (we have no children & he has no immediate family members). She is a sweetheart but does not deserve that responsibility. 'Best to live in the present.

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@sandij

I've been diagnosed with fibromyalgia. About 4 years ago things in my life just started falling apart. At the time I'd been married for just a few years (we both had previous marriages and married each other at age 48). We had just moved into a beautiful new home and I found myself in chronic pain with debilitating fatigue. It's been a real adjustment for my husband as I became less and less willing to do the things that used to bring me joy and that we did together. With the diagnosis brought a combinations of medications that ultimately led to a hospitalization caused by serotonin syndrome (although the doctors would never admit that). For the past several years I have been eliminating medications such as neurontin, tramadol, effexor and ambien. Tapering most, went cold turkey on several, with full blown acute withdrawal and/or PAWS. The ups and downs have wreaked havoc on my entire person, self esteem included. I have an understanding husband but at times I'm sure this is not something that he would have chosen for himself to live with. One of the hardest things for me to handle is the guilt over being so needy and wanting understanding. I wouldn't really wish any of this on anybody but at the same time I wish our spouses could really know the pain that chronic illness and its complications can bring on us. Thanks for reading and I hope for shared stories that will help us to feel connected. We are not alone in this, I know.

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HELLO SANDY, I HAVE ADHESIVE ARACHNOIDITIS, A CRONIC, DEBILITATING PAIN THATS CAUSES LIMITED NORMAL EVERYDAY LIFE. I CAN UNDERSTAND ALL THE EMOTIONAL PAIN VERY WELL. AT THE SAME TIME MEDICAL SIDE. I TOO HAVE SO MUCH GUILT. I TYTO MAKE IT UP TO HIM BUT I DON'T THINK IT MEANS ANYTHING TO HIM? HE IS NOT ONE FOR EMPATHY, DOES NOT SEE HOW I'M LIMPING NOW. HE DOES NOT NOTICE ANYTHING. I WALK BY MYSELF IF WE GO OUT OR AHEAD OF ME NEVER TO THINK I MAY FALL OR JUST BEING THOUGHTFUL. IT'S JUST NOT THERE. ONE THING I WILL HOLD ON TO FOR AS LONG AS I CAN IS MY DIGNITY. SOCIAL WORKER FROM THE VISITING NURSE AND I TALKED ABOUT THAT. SHE MADE ME FEEL BETTER. I SEE A PSY. WHO SPOKE WITH HIM TO NO AVAIL. DO YOU HAVE FAMILY? PETS? I HAVE 2 DOGS, 2 CATS WHO ARE NEAR ME ALL THE TIME. THEY ARE MY LIFE. I CAN'T DRIVE ANYMORE. I APPRECIATE HE HASN'T LEFT ME. YOU MENTION YOU WISH OUR SPOUSES WOULD REALLY KNOW THE PAIN WELL MY SPOUSE SAID TO ME "I CAN'T FEEL YOUR PAIN" I ASKED, CAN'T YOU SEE IT ESPECIALLY WHEN I CAN'T SIT STILL? NO! I CAN PUT MYSELF IN ANOTHER PERSONS SHOES. THANK YOU FOR SHARING!

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Thought it might be good to check in with some of you who have talked about medical problems and how they can affect your marriage or other relationships.

@sandij – how are things going with your husband and some of the ups and downs you experienced while tapering off some of your medications?

@kimspr3 – you talked about your husband not seeming to notice your limping or some of the pain you were experiencing with your adhesive arachnoiditis. Have you found your husband noting any of that lately?

@rmftucker – you mentioned the potential of sharing in this conversation to help others deal with the change in the relationship with a spouse's Alzheimer's. Sounds like you've been through a lot of changes like this. Do you have some suggestions for others of what has helped you?

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