Living with Brain Tumor or Serious Illness and Relationships

Welcome @mimispree. Being diagnosed with a serious, long-term illness like brain tumor, cancer, heart disease, neurological condition, autoimmune condition, etc. can stress even the most solid of relationships. Some endure, radically change or completely dissolve, but all relationships are affected in some way.

I believe many support groups touch on this topic. I was intrigued that you found a support group dedicated to serious illness and its impact on relationships. For that reason, I modified the title of this discussion and added it to several support groups here on Mayo Clinic Connect.

Let's use this discussion to create a safe space where members can talk about how serious illness and the impact it has had on their relationships with others - partner, children, parents, whomever. Perspectives of both patients and care partners welcome.

@mimispree, it sounds like your illness caused financial strain that added extra burden to the marital strain too. That's rough. Think of the past week. Was there a moment when you wished you had handled a situation with your husband differently? Was there a moment felt comfort and understanding from your partner?

I'm going through the same thing relationship wise but not as long. My husband is a stage 5 renal patient. He needed a lot of care is on dialysis 3x a week and I took over every aspect of housework, earning money, shopping, etc. He has Guillain barre syndrome as well and it's been 4 years. Hes on disability for a meager $1000 a month.
We did ok but I was getting tired. One day I collapsed at home and couldn't breathe. They said pneumonia. 6 days ICU 5 on a Ward and released. I was very I'll and my lung ct scans looked bad. On 100% oxygen. No prior symptoms. Not a sniffle!
2 weeks later, collapsed again. They say pneumonia regrow and I was septic. ICU again. Our hospital is small. I was intubated and sent to a large hospital 1.5 hrs away. I was on full life support. Had a bronchoscopy, my lungs washed, tests etc. Extubated 2 days later and sent home to hospital 2 days after that. Discharged a week later. Pneumonia? No symptoms. Interstitial lung disease? Symptoms dont match. Was NPO for 5 days so kidney function 18%.
Can see a pulmonologist! IN 3 MONTHS!!! Jan 3. Hubby had to do for me. I couldnt do for myself. I just couldn't breathe although 02 sats were 92 -96. I was depressed so bad. Am I going to die? Now I'm on EI so our finances were awful. He started resenting me. My 16 year old granddaughter came to live with us voluntarily to help. He soon was yelling at both of us. He told me recently hes happier being alone. That hit me pretty hard. If he leaves, and I cant work, do I get disability too? $1000 a month? I know I have PIC syndrome. I have every symptom but 2. My life has become a mess.

It seems we have to be our strongest when we're at our weakest. May I suggest applying for disability sooner rather than later. It took three years for my claim.

I am so saddened to read how you are being attacked from so many fronts. My heart is with you.

@colleenyoung THANK YOU! What you describe is exactly what I have been thinking myself, and looking for. There are so, so many challenges and changes. I do not understand my condition myself so I cannot imagine that others possibly could. A lightbulb moment for me was recognizing the benefit I have in actually feeling it all, sensations in the human body I had absolutely no idea could happen. It is the most horrific and fascinating thing I have ever experienced. I cannot imagine being able to understand symptoms never having experienced them, like providers and loved ones are trying to do. I never feel more lonely than when I am in a group of people/family/friends that are not supportive. Unfortunately, this is what happens. You look up from pushing to survive and realize you are alone. I know others are tired of me being sick. Imagine how tired I am. Imagine how tired my husband is of me being tired. Relationships either break us or carry us through. They are what brings value to our lives. They are what can endure no matter what. So, I have soul searched what I need, who my resources are, who can help me with what (because there is no one person who can fulfill it all), and how I can manage it all in marathon mode. I am learning to grieve losses of expectations not fulfilled, both unrealistic and truly realistic ones that are shattered. When I am encouraged I encourage others. It’s the gift that keeps giving. Prioritizing relationships has been the single most important thing in my life. Thank you Coleen!

Hi Folks,
About five years ago I noticed that my husband was especially cranky and just thought his imminent retirement was bothering him. Then he found himself in ER with a kidney stone and came out with a diagnosis of a type of blood cancer (CLL). There was also a problem with his lungs which was diagnosed as Cryptococcus (a fungus). Back in the hospital for a lung biopsy, he had a severe stroke and took the anti stroke meds which gave him back his movement. The stroke caused injury to his right frontal lobe, then he had chemo.
Now, he is a wreck. Where before he was calm and non confrontational, now he can become anxious, aggressive, overbearing and sure he is correct when he is not, and on and on. He scares me because he forgets things, and takes impulsive risks like he is 16 (climbing on the roof in a storm to fix something), screams at people who get in his way on the road and basically hates everything most of the time. I have not yet mentioned his chronic joint pain. So, it's a mess and I am stressed but didn't realize it as everything changed gradually after the initial shock of all these events.
He has been to a neurologist and since the stroke did not effect his movement they declared him "okay." So even though my husband can sometimes become irrational he knew that the doctors had failed to help him, and decided none of them were worth his time. Trying to live with these attitudes and understand him have about driven me to the wall so I called Mayo and they referred me to this website. I am looking for ways to help my husband regain some calmness and manage his illnesses before he hurts himself. I am looking for a way to make some sense of my life living with this man I hardly know. We are both in our seventies. Thanks for taking the time to read. p.s. I really didn't know I was stressed until my doctor,after eliminating allergies and other auto immune problems, suggested that the blisters that keep breaking out in my mouth and throat are stress related. Any tips? Thanks, Athena23

Hello:
Life can be really changed in the context of self perception. The awareness of who we are on the inside of ourself is sacred. Changes abruptly to these things are lifelong and dynamic. I have gone through and am still going through a similiar struggle like your husband. It is hard to feel, love, think, and many other things. It is so upsetting to have awareness for the lack of awareness. It can cause the deepest of psychological pain. It affects everyone I interact with. Mostly a burden upon us all. I try to have dignity and succeed only sometimes. The man you love is still there. He may be trapped on the inside of himself for very complex reasons. All we can do is our best. At times when our best isnt " good enough" , we must have thankfulness for when it actually was. My affectations have been hard on those around me at times. I have to double my effort just to make others smile. It is exhausting.
This is what my experience has been like superficially. If you ever need to talk, I am here. Best of luck in all that you do. Thanks for sharing!

For everyone who is having a problem with their spouse caregiver.
I am new to the group on Brain Tumors, having Chronic Pain issues along with damaged skeletal system, Bi-lat total knee replacements in 2000 that need revision, the worse of all, is my damaged spine and reason I found my way here is, I also have a calcified meningioma (CM) that has me wondering if it's waking up as I've had two break through migraines in the last 8/10 weeks. I am wondering if my migraine preventer and reliever are failing or my CM is on the move. My migrains started when I was aged three and always severe for 3 days in bed, no light. No fluids, food, noise just vominting bile, with a splitting head. I'm not jabbed and I don't know how that's going to effect treatment moving forward as all my treatments stopped in 2020, surprise, surprise. I've pretty much accepted my life and keep mentally stimulated. My husband and I are coping pretty well but due to also having to monitor VIN3 of the vulva after three excisions, it means we haven't been sexually active for years. If it's a problem my husband's not saying, we've been married 52 years in July. He has seen me go from being extremely active to virtually bed rest as much as possible with my knees and lower spine. They say my bones are 40 years older than what I am. We knew this would end up being my lot so we lived life in reverse, thankfully.

What I wanted to say isn't about myself but my husband. He retired in 2013. We were lucky and got in a couple of big overseas holidays that included a cruise each time. Covid stuffed that up for us, like everyone else. As long as I have my travel scooter I was managing. I did encourage my husband to get involved as a volunteer with an interest that we had been passionately involved with when we were younger, as we became qualified Scuba Divers. So he was an Information guide with the commercial side of Educating people about the Great Barrier Reef. Of course the doors closed in 2020 like everything else, that meant he no longer had two afternoons doing what he loved doing, away from home. Fortunately they made the most of having no public. The Volunteers got stood down and the paid staff went ahead with massive upgrades that needed doing badly. They won't be reopening until 2025. They will start getting everything reactivated and will need the Volunteers back next year to assist. My point is, try and get your other half or caregiver to get an interest outside the house or get a new interest. See if there are Men's Workshops active, if your partner like using his hands. Anything to getting him involved outside the house, will help tremendously with their attitude when at home.

Earlier while I was still coping better, we went back to doing Taii Chi which we both loved. Start looking for something to help your partner shift all their concentration away from being a sole caregiver, they need to find a new purpose. I also decided about 2017 that I wasn't coping with shopping, then it was the kitchen. So he slowly took on the grocery shopping, then cooking dinner at night. Very simple and now my food is basically frozen meals as my esophagus functions are restricted following a repair of a large Hiatal hernia with a fundiplication wrap. So my husband is still enjoying the food he likes. My point is, let your partner know its okay to find a hobby or interest outside of the house, that you can manager for 3 or 4 hour a couple of days of the week without him, while he goes out to do something he actually loves doing. Get them to do the shopping etc. They have gone from being full time workers and providers, to being home 24/7. Do you get my point and the suggestion I am trying to make. Push them out of the nest that's only creating animosity at home. Good luck and keep me posted on the progress.

It’s so tough because none of us really know what’s causing his change of personality but strokes definitely do that and he’s probably on a lot of crazy medication that’s changing his neurology and he’s probably severely uncomfortable and unhappy with the new brain he has. I’m so sorry you’re dealing with this. I am in great pain and I am so cognizant of how I’m treating my partner but I don’t have the severe neurological issues your husband had or has. I’m not gonna go into my issues because this is your thread.

There are so many support groups out there for people who are caregivers and I think you should join them because you’re not gonna be able to change your husband. He said 70 years old and he needs to get in a support group as well and you can see if his behavior or actions are actually related to The neurological issues that he’s experienced or if he’s just severely depressed. They are very two different things. One he can kind of do something about the depression but if it’s the other one then you’re just gonna have to take care of yourself or put him in a care home. Or see if you have family who can help him part time because there’s enough research out there that when people go through brain transformations they really really really are not the same person. Now I know marriage is better or for worse or whatever that say it is but if you’re being treated in a way that doesn’t give you your best life that’s not fair either. I’m so sorry and I really hope the best for you and please join a support group . There’s so many other people dealing with what you’re dealing with. Caregivers really take the brunt of the abuse or the neglect when it comes to someone who is sick. You’re just supposed to smile and push through when you have your own life to live and have a person who’s 6 foot you have to put your brave face on for . What if you get sick? Who’s gonna take care of you. You have to be a little bit selfish and think about yourself in some of the situation. I’m not saying leave the guy I’m just saying find something that brings you joy find a support group find friends and family you can stay and visit with him put some distance between his grumpiness and your happiness

Thank you for your personal note. I thought I would hear from another caregiver but am gratified to hear your point of view. I believe you are right in what you say about the person I knew being trapped inside. On some level he is beginning to understand too, and we are trying to come up with new ways of living together that doesn't freak both of us out = : )
I wish you well on your journey!
Athena

Thank you so much for your kind comments! I am a writer so if I can get to my office for awhile everyday, it helps me connect with all the things I love, so I am making sure that I get that time every (most) morning/s.
And, I am getting pretty good at giving myself pep talks and staying in the moment, but I have been sick recently and it really hit me that if I became ill and was unable to maintain daily functions our life as we now live it, would be over. We would have to move to another state to be near family. We have lived in the same home for 35 years so moving at this time seems impossible with all the other life events we are dealing with.
And then there is the "age" card! I have always been a hard worker and was able to accomplish a lot in a short time. Now, I seem to barely manage feeding us and keeping the house livable. The thought of big tasks such as getting my spouse on an airplane, moving, buying a new house, all of it seems difficult. The thought of having my will done seems monumental but I know it needs to be done. Seems like everything needs doing at once, so I don't do anything! Anyway, thank you for being here. It is good to write about it; writing helps me clarify issues : ) and realize that I am not the only one in this fix.
Thank you for your response.
Athena