I received an email last month and the contents of that email brought tears to my eyes because it reminded me of my own struggles of being my husband’s caregiver.
The email read…
“I don’t want to be my husband’s caregiver. It’s not that I don’t love him, or that I don’t want to help him. I just feel like I can’t do it all on my own.
I’ve been trying to apply for state programs that can help with the care and costs of caregiving, but he’s resistant. I think he’s scared that if he admits he needs help, it means he’s really sick. But I know that I can’t keep doing this on my own.
I’m going to keep trying to get him to agree to apply for these programs. It’s the only way I can see us getting through this.
This is my first time being a caregiver and I hope to God it’s my last.“
I certainly know what this woman was going through. Thrust into the caregiver role, scared, not knowing where to turn, and feeling like she’s doing it all alone is an incredibly daunting task.
If you’re in a similar situation, you’re certainly not the only one.
Here are some resources that might be able to help any caregiving spouse:
- The National Caregivers Library has information on how to get started with caregiving, including tips on dealing with resistance from your loved one.
- The Family Caregiver Alliance also has a wealth of resources, including an online caregiving forum where you can connect with other caregivers.
- The Well Spouse Association provides support and information for caregivers of spouses with chronic illness or disability.
- The Alzheimer’s Association has a 24/7 helpline (1-800-272-3900) that can provide support and information, as well as a list of local resources.
- Substance Abuse and Mental Health Services Administration (SAMHSA) helps individuals and families who are struggling with addition and/or mental health diseases.
- National Alliance on Mental Illness (NAMI) another organization that provides support for families who are caring for loved ones with mental health diseases.
Check with local caregiver groups (online or in person) for any assistance program that may be offered in your area for some help.
You can also look into the Caregiver Action Network. They have a searchable database of caregiver support groups, which can be filtered by location.
Being your husband’s caregiver comes with a lot of challenges. You’ve probably been together a long time, and you know each other inside and out.
But now that he’s sick, you feel like you’re walking on eggshells half the time.
I get it. I’ve been there. It’s a tough balance to strike, and some days you feel like you’re failing. But even on the days when it feels impossible, please try to remember that you’re doing the best you can.
When I Became My Husband’s Caregiver
I became my husband’s caregiver during the last 3 years of his life as his illness progressed and became worse.
It was a very difficult time for me, but I have to admit now that it was not as difficult as the time after he died.
Of course, at the time, I did not know that. All I knew, was that my best friend needed my help and I was ill-equipped to provide it.
I was angry, scared, frustrated and resentful, but I loved him and wanted to help him.
It’s a difficult thing for family caregivers and spouses to do, to care for someone they love. I think it’s natural to want to protect them and make sure they are comfortable and safe.
But it’s also natural to feel resentment and anger, especially when the demands of caregiving start to take their toll.
It’s also difficult for me (or most any wife I think) to see her ill spouse in pain, physically and emotionally.
You want to do anything you can to make it better, but sometimes there’s nothing you can do. That can be frustrating and certainly heartbreaking.
What I Learned From My Caregiving Experience
As an Occupational Therapist I helped to care for all kinds of patients. Those who suffered from Alzheimer’s disease, dementia, traumatic brain injury, stroke, etc.
But taking on the role of a caregiver for someone I deeply loved was significantly different.
Caring for a sick or dying spouse is one of the most challenging things a person can do. Not only do you have to provide emotional support, you also have to deal with the physical demands of caregiving.
The biggest lesson I learned from my experience was to ask for help. There is no shame in admitting that you can’t do it all on your own.
Sometimes the best thing you can do for your spouse is to let someone else take care of them.
It’s important to remember that you are not alone in this. There are many resources available to help you through this difficult time. Reach out to your friends and family for support.
If you have adult children, hopefully they can help you as well. Even if they just start helping with yard work or grocery shopping, etc.
In this article, I am going to share with you what I learned and what I wish I had done, if only I knew better.
What You Might Be Feeling
If you’re in this situation, you’re likely feeling overwhelmed, exhausted, and maybe even a little resentful. You’re not alone.
These following statements have probably already gone through your mind.
Doubt
Most anyone who is thrust into the role of caregiving has doubt about their abilities and about the new lifestyle they will be living. You’re most likely telling yourself statements like:
- I’m not sure how to handle this new role.
- I’m not sure I’m cut out for this.
- I’m afraid I’m going to screw everything up.
- I wish someone else could do this.
- I want my own life back.
- This isn’t fair.
It’s OK to feel all of these things. In fact, it would be strange if you didn’t feel them. But just because you’re feeling them doesn’t mean that you’re not up for the task.
I can tell you from experience that although caregiving is a difficult task, at times feeling impossible, it’s temporary. So, just take it one hour at a time and you can get through it.
The most important thing to remember is that you need to take care of yourself first and foremost so that you can be the best caregiver possible. Here are some things that can help:
1. Acknowledge your feelings – although you may not be able to tell your husband that you are scared, you do need to find someone to be able to talk to about what you are feeling and going through.
2. Find a support system – whether it’s friends, family, a group or a counselor, a support system is extremely important and can be your lifeline.
3. Take breaks – respite care is extremely important for all caregivers. As soon as possible, begin looking for where you can find someone to help you.
Agencies, private persons or perhaps volunteers from your church, etc.
4. Set boundaries – setting up some kind of schedule and rules with your husband is a great way to start this new relationship.
This way he knows what to expect and you know what you’re responsible for.
5. Ask for help – if and when the job becomes too much for you, talk to your doctor about where to find some personal care providers.
It’s perfectly normal to have bad days every now and then.
6. Take care of yourself – the most important thing to remember is to take care of your own health first. Your physical health and your mental health.
Otherwise, you will be of no use to your husband who needs you at this time.
7. Find a balance – just like balancing work and your personal life is important, so is balancing everything else with caregiving.
Your family relationships will change when you become a caregiver. It’s important to find a balance that works for you and your family.
8. Seek professional help if needed – I cannot express how important it is to have counseling help during this time.
I know, I’ve been there and in my experience, counseling can help you to see the light when everything seems incredibly dark.
9. Use third party services – like Uber for when your husband needs to go to the doctor or physical therapy for medical care.
Sign up for Meals on Wheels or any of the meal delivery services for ready made meals. Have groceries delivered to your home.
All of these can help to make your life easier. There are many different kinds of delivery services these days.
10. Learn from the pros – gather as much information as you possibly can from your physical therapist, occupational therapist, speech therapist, etc.
A wealth of knowledge is available to you and the more you know, the better equipped you’ll be to handle things.
11. Help from unexpected places – don’t forget to also speak to your insurance about your health insurance policy, your accountant, financial planner, attorney, etc.
Use their expertise as well to get as much help as possible for your situation.
12. Financial help – if you need financial assistance, there are many options available to you.
You may be able to get government benefits, there are various charities that can help, and many companies offer employee assistance programs.
No one said this would be easy, but you can do it. You are not alone.
Changes In Relationship
Caregiving relationships can be challenging, no matter what the circumstances.
As the primary caregiver for your husband, you may find yourself facing some unique challenges.
For older adults, the risk of falls increases, and your husband may need help with activities of daily living such as bathing, dressing, and grooming.
You may also need to provide transportation to doctor’s appointments and other outings.
In addition, you may need to manage your husband’s medication regimen and help him to stay active and engaged in life.
Illness can certainly bring about change in any relationship.
When one partner is suddenly thrust into the role of caregiver, it’s natural for there to be some adjustments that need to be made.
Not only are you going through the emotions of dealing with your spouses’ illness but you’re also dealing with the stress of being a caregiver.
It’s a lot to take on and you may feel like you’re not up to the task.
That’s okay. You don’t have to be perfect. You’re just doing the best you can under some pretty difficult circumstances.
You may find that you’re spending less time with friends and family, or that you’re unable to do the things you used to enjoy doing together.
It’s important to try to keep communication open with your husband so that you can discuss any changes that need to be made in your relationship.
It’s also important to remember that your partner is still the same person, despite their illness.
They may not be able to do everything they used to do, but there are still things that they enjoy and ways to connect with them.
Spend time talking, cuddling, or doing something together that you both enjoy.
I Feel Like I’m Losing Myself
This is a very common issue amongst caregivers, especially female caregivers.
It certainly happened to me and to be very honest, it took me years after my husband died to find myself again.
So, I hope that you can avoid that and not feel guilty about taking some time and care for yourself.
When we are in the role of caregiver, we can easily lose ourselves. We become so focused on taking care of our loved one that we forget to take care of ourselves.
We may not have time for our hobbies or interests. We may not even have time for basic self-care, like getting a haircut or going to the dentist.
It’s important to remember that we cannot take care of others if we don’t take care of ourselves first.
We need to make sure to carve out time for ourselves, even if it’s just a few minutes each day.
Maybe we can wake up a little earlier to read our favorite book or take a walk around the block.
Or we can ask for help from friends or family members so that we can have some time to ourselves.
Taking care of ourselves is not selfish. It’s necessary. We need to be healthy and happy if we want to be able to take care of our loved ones.
So, if you’re feeling overwhelmed, remember to take a step back and take care of yourself first.
Is It Normal To Resent Being A Caregiver?
It’s normal to feel overwhelmed when you’re suddenly thrust into the role of caregiver. It’s also normal to feel resentment, anger, and even guilt.
These are all common emotions that caregivers experience.
The key is to find a way to deal with these emotions so they don’t take over your life. I’ve mentioned these before but believe me, it’s so very easy to lose yourself in caregiving!
So, I want to repeat them.
1. Talk to someone who understands. It can be helpful to talk to someone who has been in your shoes before. They can offer support and advice on how to deal with the challenges you’re facing.
2. Take a break when you need it. I know I’ve mentioned this before but it’s SO important! Caring for a loved one can be 24/7 job. It’s important to take a break when you need it, even if it’s just for an hour or two.
Get a sitter or ask a friend or family member to help out so you can take some time for yourself.
3. Join a support group. There are many support groups available for caregivers. This is a great way to meet other people who are going through similar experiences.
It can also be a place to vent, get advice, and find support.
4. Take care of yourself. It’s important to take care of your own physical and emotional needs. Make sure to eat healthy, exercise, and get enough sleep.
Taking care of yourself will make you a better caregiver.
5. Ask for help. Don’t be afraid to ask for help when you need it. There are many resources available to caregivers, so don’t hesitate to reach out for assistance.
These are just a few tips for dealing with the challenges of being a caregiver.
If you’re feeling overwhelmed, remember that you’re not alone. There are many people who understand what you’re going through and can offer support.
How Does Caregiving Affect The Marital Relationship?
Caregiving can put a strain on any relationship, but it can be especially hard on a marriage.
After all, you not only have to deal with the stress of caring for your ill or elderly spouse, but you also have to juggle your own needs and desires.
Spousal caregiving tends to be higher-intensity than other types of caregiving (more medical and nursing tasks, less sense of control over caregiving decisions, more solo caregiving), and 66% of spousal caregivers provide care without any unpaid or paid help (versus 29% for other types of caregivers).
wellspouse.org
It’s no wonder that many caregivers feel overwhelmed and resentful.
If you’re in a caregiving situation, it’s important to take steps to protect your marriage. Here are a few tips:
1. Communicate with your spouse. Be open and honest about your feelings, fears, and needs. If you’re feeling overwhelmed, let your spouse know. It’s important to work together as a team.
I have to admit that I had a difficult time communicating with my sweet husband. His condition was so fragile and he was having a difficult time coping that I just felt I couldn’t burden him with my feelings.
I should have spoken to a therapist about this situation and gotten some help but I did not so I strongly recommend that you get some help to work through any communication issues you may be having.
2. Make time for each other. In the midst of caring for your spouse, don’t forget to nurture your relationship. Spend time together doing things you enjoy.
My husband became more reclusive as his illness worsened so we took advantage of watching movies (which we both enjoyed) and cooking some great meals.
3. Seek support. Join a caregivers’ support group or talk to a therapist. It can be helpful to share your experiences with others who are going through similar situations.
As I said, I did not take advantage of this and it’s one thing that I do wish I had. I will never know if that could have helped me on those days when I just didn’t think I could survive it.
4. Take care of yourself. Don’t forget to take care of your own physical and emotional needs. Eat healthy, exercise, and get plenty of rest. Taking care of yourself will help you be a better caregiver.
I focused on my work (which I enjoy) so that was my “escape” from my duties of caring for my husband.
5. Seek respite care. When possible, take a break from the tasks of caregiving. Ask family and friends to help out, hire a private home health aide, or contact a home care services company in your area.
You may also be able to get your husband into an adult day care center if it’s appropriate. Taking a break will help you recharge and come back refreshed.
I was very lucky in that I had friends and family who helped me, especially during the last year of my husband’s life, when it all got so much worse.
Caring for a spouse with a chronic illness can be challenging, so don’t beat yourself up if you feel that you are not up for it. There will be days when you can and days when you just can’t muster the courage.
Can I Be A Paid Caregiver For My Husband?
It’s a question I get a lot. Can I be a paid caregiver for my husband? The short answer is yes, you can be a paid caregiver for your spouse. But, it’s not quite that simple.
Truth is you need to meet certain requirements which include where you live.
Eligibility depends on a number of factors, such as one’s state of residence, one’s income and financial assets, the types of insurance one has and if either the caregiver or their spouse are veterans.
payingforseniorcare.com
Your household income is one of the biggest factors in determining whether or not you’ll be able to get paid for being a caregiver.
You do need to know that Medicare does not pay for this so that’s a dead end.
But, you can speak to your employer (if you’re working outside the home) about the FMLA (Family & Medical Leave Act) and how you can participate in it.
There’s much more information about this so check it out at PayingForSeniorCare.com. They pretty much cover most all you need to know on this topic.
Can I Be Forced To Be A Caregiver?
No one should be forced into a caregiving role, but it happens all too often.
Whether it’s a spouse, parent, or other family member, many people find themselves in the position of being a caregiver, whether they want to be or not.
So, it’s true you can’t be “forced” into being a caregiver but being in a committed relationship such as a marriage is for “better or for worse.” You would hope that your husband would do the same for you.
Still, having said all that, I do acknowledge that not everyone is capable of performing the caregiving responsibilities that their sick spouse needs.
As I mentioned earlier, there are plenty of resources available to help you if you as a caregiver. T
hese include support groups, online forums, and books. There are also professional organizations that can provide guidance and advice.
The most important thing is to make sure that you’re taking care of yourself, both physically and emotionally.
It’s also important to set boundaries and make sure that you’re getting the support you need.
Some Helpful Books
It wasn’t until after my husband died that I began reading some wonderful books that I should have read earlier. I guess I just wasn’t thinking straight at the time. So, learn from my mistakes!
Final Thoughts
I spent 25 years with my beautiful husband and although it’s been over 7 years since he died, there isn’t a day or even an hour where I don’t think about him and miss him.
Yes, caring for him was difficult but because I loved him so much, I would have done anything for him. You probably feel the same way.
I know there are others out there who are in the same situation as I was and I just want to say that you’re not alone. It’s okay to feel overwhelmed, exhausted, frustrated and even angry at times.
Just know that you’re doing an amazing job and that your loved one is lucky to have you.
Take care of yourselves and each other.
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