My wife was diagnosed with MS four and a half years ago, right around the same time I began a new career with the federal government. That first year was tumultuous and honestly it still is to some extent.
I feel like my needs and wants have become back burner problems to those of my spouse and kids. My existence seems to be compromised of taking care of everything. It is exhausting. I am try really hard to keep myself in check when it comes to the ‘me, me, me’ attitude but also do have needs that need to be met.
I have very little support from other men who are also dealing with similar life experiences. I need a support group, local (can’t seem to find anything) or online. I have tried therapy and have been unsuccessful in being regular and have has EAP cases closed three times to missing Appts due to forgetting, not calling to cancel, double booking. That inability to keep up with it adds to the already stress I am dealing with.
Starwoid, hello, and welcome to our extended family here in the chat room. I am speaking to you from a person living with MS. There might be a few caregivers mixed in our family members. but honestly, I think their numbers are few and far between. I can only imagine how full your plate is at this time. When you're taking on the responsibility of running the family, taking care of the kids and now taking care of your wife, who is dealing with a life-altering disease. Understand this is probably upsetting your wife as well as you. Since she is no longer capable of doing what she used to do. Have you thought about getting help around the house to give yourself a break? That way, perhaps you could fit in a little bit of me time that you're craving to help you cope with your new situation.You talked about going to counseling. Perhaps you should try to go to counseling together. I'm sure the root of many of your troubles is, if you realize or not, is that you are both scared to death of what the future will hold. This is an exciting time in MS research. They are pumping out 2 and 3 new DMT's or disease, modifying therapies a year. So join us in praying for the miracle that a cure is found for MS. Try to be patient and understanding with your wife because she needs both at this time. As much as you're dealing with, she's dealing with times more and scared to death the entire time. Wondering where MS will lead her and what it will rob her of.
I hope this helps. Make sure your wife is going to a neuroogist that specializes in MS. It really does make a difference. If you have specific questions, feel free to post and ask them at any time. Fancy59.
Thank you so much for your response! To add a bit more context, though my wife has MS, she is making the most of her strength she does have to work and help provide. This is really two fold, at first she planned to file for disability but found because she took off about six years to care for our children she did not have enough quarters to be entitled, so when she had enough strength to, she went back to work to earn them. Through being active, PT and OT, chiropractic, and medication she was able to really excel at her job to the point of going to full time and working her way into a communications job with the commissioner of public health in our state. Though it does take a lot of here energy, she realizes she may not be able to work forever (and likely won’t be able to) so she shoulders on.
So caregiving in my capacity looks more like doing a lot of the early morning kids stuff, working with the kids (13, 11, 9) to do a majority of the housework, taxiing for kids activities, etc. in order for her to be able to love life while she can. Also, the more we can do to support her, the more she feels like despite her MS, her life and contributions matter. Leading up to her MS diagnosis she had been very sick starting with AFib right before and for about three years after our second son was born, there ablations and a restart of her heart we thought we were in the clear. Then came the gastro issues, which led to removal of the gall bladder, a bile duct surgery and then pancreatitis, all that went on for about three years. Again we thought she was in the clear and then dizzieness, fatigue, and a seizure led to the MS diagnosis.
At first we were both devastated, she lost function in almost the whole left side of her body, requiring a walker and from time to time wheelchair, She also had near blindness in that eye. At that point, my not knowledge of MS was a HS Lang Arts teacher who was diagnosed in the 90s and she almost immediately took time off and to my knowledge never returned to teaching., it was devastating for her. I didn’t know about all the options people with MS have now. She has taken her diagnosis now as a challenge and a blessing, giving her the drive to take the world by the horns. I am still struggling with accepting, short of a miracle, that this will be a long term diagnosis.
I really appreciate your quick response and encouragement, I may have just used this reply as a journal entry of sorts. If you made it this far… cheers!
As Fancy59 said there are not many caregiver posts among our members but hopefully someone will reach out to you. It is easier to get more personal and detailed through the Chat rather then regular posts.
If you found therapy helpful, try to find a way to continue. If finances allow, getting help with mundane chores will allow you more free time. Sometimes family is willing to help, they just need to be asked.
Thankfully our kids are old enough to help with household chores, but I am also trying to find ways to take some of that off them, as there are times that the expectations are too much on them and don’t want them to resent their mom or myself if I don’t handle something not getting down.
Thankfully we rent in a HOA so I don’t have to keep up with the yard, that helps a lot! We also have a dishwasher and have attempted capsulizing our wardrobes as much as possible to keep laundry down I am considering sending some laundry out, especially my wive’s business clothing she uses for work, my above reply explains that she does work professionally, which has actually given her something to be proud of and a sense of purpose, when she was home it was difficult for her to stay motivated when she had fatigue or pain, as she found her self resting more than she wanted and she became very depressed.
I have recently acquired a robotic vacuum and am wrapping the bottom of the couch to keep too much from finding its way underneath. Hoping I can get these two things done this weekend.
My mom comes up to help some but she is about two and a half hours away. Try to not ask for too much because she comes to spend time with the kids, but she pitches in a lot while she is here. We also have an amazing family of followers of Christ that help all the time. We are blessed when we need help and thankfully always have. One family is now going through some possible autoimmune diagnoses testing. Pray for them.
I'm just going to echo the other responses. It's very important that you find time for yourself, for doing things that are fun and relaxing for you.
If your kids are old enough, get them to help with household chores. Find shortcuts to everything you do. The house doesn't really need swept and dusted as often as you think; just keep the bugs and mice at bay. Switch to disposable plates to save time washing dishes. Assign everyone "work/school clothes" and "play clothes", then hang them up in between uses to save on laundry. Hire someone to cut the grass.
Whatever you do, take time every day just for yourself, even if it's just 15 minutes of silence while you drink your coffee.
I like the idea of the activity specific clothes, with three kids, might take a little work, but I think it would be worth the try. We are already doing some of the other chore charts and things, it has helped me to have some me time after everyone gets to bed.
I will definitely be looking into some ‘life hacks’ to help with general life tasks. I did just acquire a robotics vacuum and hope it will help with that time intensive task.
I definitely need to be more intentional about me time though and build it into my schedule. One of my therapists actually told me I need to plan activities to ‘look forward to’, as I have been buying and accumulating stuff online in an attempt to fill a hole, which has caused stress in the bank acct. looking to plan a weekly art time to blow off some steam.
Thank you for taking time to respond and encourage.
Sorry for your predicament, I am a woman but I have just found a link on ms-uk.org although it is based in the UK it has lead members attending from other countries and they have a group of carers it is called Care givers peer pod who meet the first Tuesday at 5pm UK time in the month. I have not attended yet myself but I am hoping to and the leaders are male and have partners who have MS. One of the Leaders is Russ who is based in North Carolina. Take care.
Thank you for joining and sharing your story as a care partner. There may be some great words of comfort for you in this MSAA Podcast on "Caring for the Care Partner" - it's a good listen, and you can listen to it on our website below or search for "MSAA Podcast" wherever you listen to podcasts:
I want to commend you for being there for your wife. I have been married to a wonderful man for 36 years but on my MS journey, I have never felt so alone. Watch the video John sent you and try your best to take care of YOU. (Put on your own oxygen mask....) Do try to get some house help. Depending on the age of your kids, it will be very beneficial for everyone to have a job to do in the house. My kids have always had a task/job in the house starting from when they were pretty young. It helps them grow into responsible adults!
Thank you so much for the suggestions and words of encouragement!
Unfortunately I think for people with MS and their caregivers both experience loneliness. It has been my number one problem through all of this. My wife’s struggle with MS is far worse because she has the mental and physical aspects. I can’t imagine what she goes through because some days I can’t function just having to deal with the mental stress.
When I asked my wife to marry me, as 24 and 19 yr olds, we had no idea what the future would hold, but my parents and grandparents set the bar high, you both work 💯 and no one gives up. To this day I live by that, it’s easier to walk through the bog hand in hand that sinking alone.
Welcome! Therapy may be available online at a more convenient time for you. I agree with everyone about hiring help/services or delegating jobs to family members to lighten your load.
Edit: I've read through your replies and congrats on the robot! 🎉 The kids can tidy their space and run it themselves...and when my arms are weak, so can I. I have no solutions for the kid taxi situation 😵💫 If they can prep for the next day during bedtime routine, then it lessens the morning stress (1mo into school and I'm still struggling with that one). I like outfits for school to be made up ahead of time, and have a drawer of play clothes in the kitchen so they can grab and go. I make my husband go away sometimes. He enjoys golf and cards, but anything away from the house means no one can find him and ask him to do stuff.
Welcome to the forum, Hidden . You have many on the forum giving you information on caregiver support. I can offer you my prayers in hopes that you can find this information helpful. 🙏
I understand. It is hard being a caregiver. I went thru it with my mother who had a stroke. You have to take time out for yourself. My prayers are with you. Hang in there.
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