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Who is this familiar, yet unrecognizable person who has just informed me that he is going on a hunger strike? He is demanding an immediate $300 pile of cash plus another $100 per month. He says he won’t eat until he gets what he wants.
Oh, yeah, he’s my husband, and I’m afraid he’s about to jeopardize the plans we’ve made for our retirement . . .
Five years ago, I went through the scariest and most difficult time of my life when my husband had a ruptured brain aneurysm and subarachnoid hemorrhage. The bleeding in his brain caused permanent damage, although we feel lucky that he survived at all.
You might not realize that he has a disability if you met my husband on the street. He seems in pretty good shape, except for his severe memory loss, cognitive problems, unpredictable mood swings and depression.
Although he takes an anti-depressant, he continues to have severe mood swings. He will yell, scream and curse at me or our adult daughter for no reason.
It’s hard to predict what will set him off. His doctor told us it is due to his brain injury, and that the anti-depressants my husband takes will only take the edge off his volatile moods.
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He wasn’t like this before he had a ruptured aneurysm.
I try not to take his behavior personally because I know that it’s a result of a brain injury that makes him act this way. However, it causes me a lot of stress, and I worry that being his caregiver will have a negative impact on my health.
Hidden Costs to Caregiver Health
My fears are not unfounded. There are hidden costs to caregiving that take an emotional and physical toll. A recent study conducted by the National Alliance for Caregiving showed:
- Caring for a spouse is more stressful than caring for another relative.
- Those caring for a spouse are at a much greater risk of declining health.
- The negative impact on the caregiver’s health appears to increase over time.
Local and online caregiver support groups are available, and I check in as needed. There’s a hidden cost in the time and expense related to visiting a support group in person, as the one closest to me is over 50 miles away.
As a benefit of my job, individual counseling is available to me at no cost. Time away from work and travel time are hidden costs, however. Counseling can be a valuable resource, but I end up feeling depressed about my situation if I focus on it too much.
I love my husband and I’m committed to our marriage. I should probably be investing more into our relationship, but another hidden cost of being his caregiver is that I have very little emotional energy left.
There are times that things are great between us, but most of the time I feel on edge. In some ways, my job is my refuge.
Since he acquired a disability, I’ve taken on the role of primary wage earner. My employer offers a pension as well as a 457 deferred compensation plan, so taking advantage of these opportunities has really helped me to up catch-up our retirement savings.
We have mapped out a plan for catching up our retirement savings, and for what we will do together in retirement. Due to his disability, my husband was able to retire from his job and collect his pension early. He wants me to retire, too, so that we can begin traveling.
I’m not quite ready to retire, though, because I still feel pressured to catch-up our retirement savings. As a compromise, we have been taking several big trips each year while I’m still working. Despite his disability, we’ve enjoyed some amazing vacations together!
Hidden Costs to Financial Security
Although we are now in a good place financially, my husband’s disability and impulsive behavior makes me worry about our financial security.
It’s unclear to me why my husband is suddenly demanding $300 cash. He hasn’t been able to articulate why he wants it or what it is for. He already has access to spending money, as I load cash on his debit card each week. He forgets that. Unfortunately, he no longer has any concept of money and is unable to account for it. Once he spends it, he has no idea where it went.
Our lawyer advised us to get a trust in place, which we have done. The lawyer cautioned that my husband no longer has the capacity to manage our money. Unfortunately, I’ve witnessed numerous situations where my husband has proven just that – he is unable to handle money since having had a ruptured brain aneurysm.
One of my biggest fears right now is that my husband’s mood swings, unrealistic and simplistic views about the future, impulsiveness and memory loss will derail us on our path to financial independence (FI).
We’ve worked hard to turn our financial lives around since getting out of debt. We are so close to becoming FI, but without safeguards in place, my husband would unwittingly spend all our money.
Like the 1 in 5 caregivers who reported increased financial stress as a result of providing care for a loved one, I still worry about money even though we are debt free and have an emergency fund.
Hidden Costs of Caregiving to Career & Retirement
It doesn’t surprise me to learn that caregivers often sacrifice wages, promotions and retirement security due to conflicting responsibilities at home and at work. Another study I looked at estimated the losses in wages, Social Security and pension benefits due to career interruptions related to caregiving exceeds $324,000 for an average female caregiver over time.
The hidden costs associated with caring for my husband makes me want to save a much bigger retirement nest egg.
If I’m going to be honest, I’ll have to admit that financial considerations are not the only reason I leave the house to go to work.
In case you were worried, his hunger strike didn’t last too long. Just until he got hungry and forgot about the hunger strike!
I also figured out that using a debit card was increasing my husband’s anxiety, because he couldn’t track how much money he had left to spend. We switched to a weekly cash allowance, which seems to be working better.
Question: What hidden costs do you anticipate having to deal with when it comes to caring for a loved one, now or in the future?
I’d love to hear your thoughts, please share in the comments!
Hi Kathy,
I’m sorry to hear about your challenges as a caregiver to your husband. Despite your difficult situation, you’re clearly grabbing life by the horns and steering it in the direction of your choosing. Your strength and resilience are an inspiration to us all!
Hang in there my friend.
Chrissy
Thank you, Chrissy! I’m doing the best I can & try to make sure I take care of myself, too. I do a lot of yoga for stress relief.
Thanks for your kind words!
It’s the toughest job to be the primary caregiver…. wishing you the best!
I appreciate your well-wishes, Mashibaby. Thanks for reading & sharing your thoughts!
I admire your strength and courageous spirit! Best wishes to you and your husband.
Thank you, Sharon!
I’m sorry you are having such a tough time. It must be so difficult dealing with the change in your husband as well as the financial burden. It sounds as though you have immense love for each other however and that you are still able to enjoy happy times together.
The only similar experience I have had is indirectly. My mum was a carer for my Dad who was in the latter stages of dementia. He was too stubborn to go the doctors however so they never accessed any help and support! I live away from them so hadn’t realised how difficult it had become for my mum until my Dad sadly passed away last year and it all came out. Massive respect to you and anyone else in this position x
Aw, thanks, Alison! Yes, we still enjoy happy times together!
Sorry your mum went through such a tough time at the end with your Dad’s dementia. I think it’s hard for caregivers to ask for help sometimes, but we all need to do it!
Caregiving is emotionally taxing. I was a caregiver for my elderly grandparents for 10+ years, and then for my husband who suffered an accident and several surgeries from ensuing complications. Praying for strength and light for your path. 🙏
Thank you for sharing your experience, Andi.
Yes, the emotional costs of being a caregiver are huge. Thank you for your kind words. I hope you have discovered a way to find strength and joy on your path, too!
I can’t even imagine how difficult that must be! You are a very strong woman! All the best!
-Morgan @ http://www.mommyaboveall.com
Thank you, Morgan!
Hi Kathy, sorry to hear about the problems you’re facing. And yes, it can get costly caring for loved ones in the long run. They do offer respite care for primary caregivers because you need to take care of yourself as well!
☼ cabin twenty-four
So thoughtful of you to point out that primary caregivers can often get respite care, Eena! Thank you for that! I’m lucky enough to be able to get some help from family & friends, so I do get longer breaks when I need them. You’re right that it’s important for the caregiver to manage stress & stay healthy in order to be effective.
Wow, I had no idea how difficult it is to care for a loved one. Such a thoughtful and well written post, I hope more people can read about it. Thanks for sharing such a lovely blog post! Will keep this in the back of my mind.
You are so sweet, Kaye Chen, thanks for making my day!
Often times, the hidden costs are worth caring for our loved ones. Even though it might make us work a bit harder, we want the best for them. I admire that you’re taking on the responsibility as the primary provider and you’re doing great. Sending you and your husband positive wishes.
Nancy ♥ exquisitely.me
Thank you so much for the support, Nancy! We’re all in this thing called “life” together. As former First Lady of the United States, Rosalynn Carter once said . . .
“There are only four kinds of people in the world –
those who have been caregivers,
those who are currently caregivers,
those who will be caregivers, and
those who will need a caregiver.”
oh goodness I never thought of this and I am definitely thinking of you during this time!
Thank you, Ashli! I appreciate your support!
I can’t even imagine what you have had to go through on this journey, and I commend you for being there for him when he has needed you most. I feel like when most people hear ‘costs of caring for a loved one’ they only think of the financial side of things, but it is a much bigger investment. As you said, your health and well-being will also take a toll. Don’t forget to prioritize self-care, you deserve it!
You’re right about that, Britt – there are many unseen costs to being a caregiver. I’m making it a priority to focus on self-care, too. It’s good to have reminders to do so. Thanks for stopping by!
I am sorry to hear about what he and you had to go through, I can’t imagine how tough that must have of been.
Being a primary care-giver is extremely challenging and it seems like you’ve taken every challenge and worked with it and made the best of every situation. You are an incredibly strong and it’s amazing how you have stepped up without a second thought.
You do so much, always remember to take care of yourself too though 🙂 self care is so important. I loved this article thankyou for sharing!
..sorry it took me so long to return the comment love, life got crazy
-undoubtedlyyoung
Thank you, k.a! It’s possible that many of us will end up being caregivers in our lifetimes. For some, like me, it comes sooner than expected. Good point about self care, thanks so much!
Sorry to hear of your husband’s condition. Wishing all the best. Thank you for sharing your post.
Thank you, Lauren!
Thank you for sharing your story. It is so important to hear from the caregiver. Society takes that role for granted — there is a huge hidden “economy” in caregiving.
My family culture is very multi-generational, and it is what made me very conscious of personal finance at a young age. I always had in my mind that I may be expected to support my elders, and you never know when that can come. So far, it hasn’t happened yet, but it is something that prompted my early savings habit and push for FIRE.
Your story is a beautiful love story. You are clearly a very loving and generous person.
Caroline, thank you, I appreciate your comments! You’re right about society taking the role of caregivers for granted. I also work as a social worker in an agency serving elderly & disabled people who need caregivers to be able to stay in their homes. Often, family members give up their jobs in order to care for a loved one. It’s smart of you to plan ahead and grow your savings!
I think the scariest part about the future is the unpredictability of the health insurance and drug prices. Your wallet determines your mortality. Hang in there.
Healthcare costs are a huge concern & one of the biggest challenges early retirees face. It’s important to consider how you will cover those costs, and disabled people and their caregivers often have increased costs. One reason I spend a lot of time hiking and playing in the garden, Michelle! Thanks for your support!
Wow what a beautiful post, so open, raw and thought provoking. You really do have my greatest admiration 🙂
Thank you, Yaya! I appreciate you stopping by and taking the time to share your thoughts!
Thanks for sharing your story Kathy! Wishing you and your husband all the best.
Thank you, Michael. I appreciate your comment!
Goodness me, what a scary thing to go through. My Mum is a caregiver for my Granddad, who’s just been diagnosed with terminal cancer. Thankfully the NHS provided LOADS of stuff for him, which we’re very grateful for. But it does take it’s toll.
Jenny
http://www.jennyinneverland.com
Jenny, I’m so sorry to hear about your Granddad’s cancer. That’s a heartbreaking disease! Wonderful that your Granddad has so much support, though. Yes, caregiving does take it’s toll, so hopefully your Mum can get a break, too.
I admire your strength and tenacity during this time. Thanks for sharing your experience with caregiving. Definitely something we should all think about.
Thanks, Emma! I wish I would have put things like disability insurance and an emergency fund in place much earlier in life! You really never know when a crisis may happen.
Thank you Kathy for writing so honestly about your experience. My Dad is my Mum’s primary caregiver – Mum has dementia. I worry about them but they are fiercely independent at the moment.
Wishing you and your husband the very best of happy times among the challenges ahead
I’m so glad you stopped by, Latestarterfire! Thank you for the support and I wish the best for you and your parents, too! It can be difficult to navigate the complicated path of caring for parents, as they are used to being independent. It’s hard to accept losing one’s independence.
So many great insights and truths here!
Thank you, Lisa! It’s always important to see the jewels hidden in the dirt along life’s path.
My father is now my mother’s carer. Mentally she’s fine, but physically she’s very frail. It’s a full-time job.
What a horrible thing to have happened to your husband – a horrible thing for everyone. You’re a very strong person.
Thank you, Frogdancer Jones. Yes, caregiving is a full-time job. We do what we have to do, it starts with love.
Great post, Kathy. This hits at the center of something that people rarely think about. However, it is an extremely important topic.
It sounds like you are working hard to take care of him. That’s a tough job, especially when you’re also still employed.
Keep up the good work. Maintain healthy boundaries, and also keep your own health a priority. Look out for yourself.
Really enjoyed reading this, thank you.
Thanks, Matt! You’re right, we don’t like to dwell on the negative or think about what unfortunate things might happen in our lives.
With planning, debt avoidance, disability insurance, and savings, we can be set up to handle what life throws at us a little easier.
I appreciate your kind thoughts about self-care!
Kathy,
My heart goes out to you for all that you have had to endure. You are doing an amazing and selfless thing caring for your husband and taking on the role of the primary wage earner.
Thank you for putting this out there as well. From experience, a lot of folks don’t truly understand what it takes and “costs” to be the primary caregiver for a loved one.
While I have yet to experience this first hand myself, I have seen what my mother has had to endure after caring for 2 family members. One was diagnosed with terminal cancer and the other kidney failure followed by a horrific accident. She has had to do just about everything on her own with little to no help and I have seen the toll it has taken on her.
Most have not been able to sympathize or truly understand just how hard it can be or what the hidden costs are for her as the primary caregiver and very few friends and family have reached out to provide support or help which has been eye opening.
I wish you both all the very best. May you have the strength, healthy and support you need.
Your words are touching, FI Girl, thank you so much!
Yes, it’s hard for others to really see or understand what it’s like to be a caregiver. To the outside world, my husband appears “OK” at first. It’s only after spending time with him that his memory loss and moodiness becomes apparent. When I need a break, I do ask his family for help. They are very good about having him over for a few days to “visit” and the social interaction is important for him, too.
So sorry to hear about the struggles your mom endures as a primary caregiver, too. She sounds like a superstar! It’s unfortunate that others don’t volunteer to help out, but they may feel at a loss for what to do. I’ve found that I have to ask for specific help, and then people step up.
Thank you so much for sharing this, Kathy. I’m sorry for the struggle and hurt you’re enduring mostly in silence as you love and care for your husband.
Money and finances are super important, but this is a great reminder that none of us know what the future holds. Life can often take turns we never expected or anticipated.
It sounds like you’re doing a pretty incredible job at handling “all the things” even if it doesn’t feel that way a lot of the time.
I pray you are still able to realize so many of your dreams with your husband and family.
Thank you for your kind words, Aaron! I really appreciate the support.
We didn’t expect for things to go the way they have, but because we’d already been working on eliminating debt and living below our means when my husband had a ruptured brain aneurysm, we have been able to adjust.
So many of us think we’ll be able to pay off debt later, or save for retirement later, but what if one person gets injured or sick? We learned firsthand that life doesn’t always go as planned. Being flexible and focusing on our values have helped us to see that we can still reach our goals (they may just look a little different).
This situation is a hard one to deal with. Disabilities like this can make it feel like your hard work is going to disappear. But the fact that you can keep going and save is an example we all need to follow. Stay strong! I know it’s hard, but the fact that you’re still working hard and making progress is an inspiration for many people who may deal with this in the future.
Thank you for the support! We’ve learned to make adjustments, The BrilliantBudget. What else can we do but move forward? It’s the best direction, even if it is hard.
I am so sorry for everything your family is going through since your husband’s aneurysm. I watched my aunt care for my grandma for 7 years after a major stroke, and I saw the toll that it took on her. It sounds like you are making smart decisions and protecting your assets, but please make sure to take care of your mental well-being as much as possible. Wishing the best for you and your family.
Thank you for your kind comments, Brooke! Caregiving can definitely take a toll, but it gives us a chance to practice compassion. Some days are easier than others for me. I’m sure that was true for your aunt, too.
Hi Kathy, What a beautiful and informative post you’ve written. I have no loved ones that are dependent on me right now but it’s extremely eye-opening reading about what is going in your mind financially. Wishing you all the best! Hoping that you can reach FI sooner than later 🙂
Thank you so much, Lynn! I appreciate your feedback. We never know when we will be faced with challenges, but one thing is clear, life can be challenging! I wish I’d prepared ahead of time, but I’m grateful we have been able to turn things around financially.