Has anyone delayed their own medical care in order to provide continuous care for a loved one?

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Has anyone delayed their own medical care in order to provide continuous care for a loved one?

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I have a relative in a nursing home that I have been responsible for during the last 5 years. The nursing home is an hour and an half drive from my home. Other family members live in different parts of the country and are not available to help. I have been delaying surgery on a very painful foot (my foot) condition for the past year because I would not be able to drive for 2 months after the surgery. I am concerned I would not be able to get to the nursing home if there were an emergency situation.
I am truly struggling with this situation, and I think it would help me if I could hear how other people have handled a situation like this.
Thank you.

Family Caregiver Medical Care Sacrifice

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omg I'm so happy to know someone other than myself is struggling with caring for a loved one I myself is struggling mentally physically emotionally and financially I'm 77 years young driving 1hr one way daily to visit my son who's in a Rehab facility because of a traumatic brain injury it's been over a year now and its beginning to tear me apart my daughter has begun to visit him once a week that saves me one day I'm willing to work part time to pay someone to assist me 2 to 3 days a week so I can have my life back

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Reply to Loveandfaith

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Get your surgery. IF there was an emergency, the staff should get your loved one to an ER. The staff and the ER can always call you if needed.

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Reply to Taarna

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Why not move the patient closer to you if you're the only one doing all the driving? Make things easy for you.

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Reply to my2cents

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Hello my2cents,
Thank you for responding; your input was very helpful and greatly appreciated.
Believe me, I thought many times about moving my loved one closer to me!! However, she has (had) many friends in town who were nearby and could visit her. This was important; it helped ease her transition from living independently to living in a nursing home.
Also, my loved one is on Medicaid, and I live in another state.
Moving her to another state while on Medicaid would be very complicated.
And, unfortunately, my loved one’s health is now deteriorating rapidly, and moving her is no longer being considered.
Thanks again for responding.

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You have done a lot for your relative, but please also take care of your own health. Notify family members and the staff at your relative's residence about your upcoming surgery and the time off you will have to take. Discuss backup plans. Ask your relative's other family members to back you up while you are recouperating from surgery, if you cannot handle an emergency by phone. And there is also the issue of whether you'll need help during your recovery period. I hope you have friends and family that can help you out, if needed.

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Reply to NancyIS

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Sigh123, visit your loved one, explain to them that you are having surgery and it will be several months before you can return. Since you don't mention dementia, I am assuming this is a conversation that you can have. Then make arrangements with the staff to be able to have regular phone calls, zoom calls if they allow so you can see each other (or Facetime or Facebook video call), over the months that you aren't able to visit. This way, your loved one will know that they haven't been abandoned.

If there is an emergency, she is in the right place to get immediate care. Perhaps before you have your surgery, you could have a few friends who would be willing to be on-call if there was a need to get you to the nursing home or hospital asap. Of course, let them know you will pay them for their time. Of course, there is also ride services like Uber and Lyft. My son routinely drives people two hours to airports.

Take care of your foot so you can get back to caring for your loved one.

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Reply to graygrammie

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Thank you for your response. It is very helpful and greatly appreciated.

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Sigh123: Yes, I required hammer toe surgery, but had to delay it when I had to move out of state when my mother could no longer live alone. The condition is when one toe crosses under another toe and is very painful.
YOU are fortunate as your LO is in a nursing home.

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Reply to Llamalover47

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Thank you for your response. It was very helpful and greatly appreciated. My foot condition is hallux rigidus of the big toe. First diagnosed 5 years ago, and has gotten progressively worse. Extremely painful now, just like your hammer toe. Hope all went well with your hammer toe surgery.

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Now is the time for the family to step in. Ask them to help

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Reply to Miamituti2024

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Thank you for your response. It was very helpful and greatly appreciated.

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I would take care of yourself! I know 2 months seems like a long time, but you deserve to be pain free! Do you have the means to hire a private patient advocate to help out in person or virtually during that time?

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Reply to EncompassCare

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Thank you for your response. It was helpful and greatly appreciated. I do have a husband, a sister and a cousin who will be able to help out.

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I would definitely take care of my medical needs first. You lo will be taken care of and perhaps you can explain to them you won't be around for a while due to surgery but will call and write. Unless you absolutely don't trust the home they are in the person should be ok in your absence.I dunno but maybe this helps. Good luck!

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Reply to Lwayne

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Thank you for your response. It was helpful and greatly appreciated.

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Have you considered possibly trying to get rehab for yourself in the same facility? That would at least cover part of the time you need to be down.

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Reply to KPWCSC

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Thank you for your response. Your suggestion was a great idea, and greatly appreciated.

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Your LO is in good hands. Take care of your own medical needs, now.

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Reply to JeanLouise

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Thank you for your response. It was very helpful and greatly appreciated.

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I just discovered this resource: https://www.careyaya.org/

They offer more affordable caregiver services that may help.

We are not eligible to use their service because of my husband's PEG tube.

But yes, while everyone (including many on this board) constantly preach take care of yourself first... the reality is in order to do that, a caregiver has to have a back-up system and most people don't have one due to lack of resources. This is especially true where a caregiver needs a procedure and recovery time.

Interestingly, most of the people who preach it would never offer to help you achieve that goal or help find resources.

If you have not already, check with your regional Council on Aging for possible respite grant that may help or suggestions of other possible funding.

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Reply to KPWCSC

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Thanks so much for the information, Greatly appreciated!

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I have neglected my needs, my health, and my sanity for years for my mother who never appreciated anything anyone ever did for her. As everyone has already said, I’m not sure why we all tend to feel guilty about this. It’s easier to say don’t feel guilty, but the feelings are still there. I do regret letting my mom control my entire life because now I feel like I’m not gonna live long enough to even see her buried. She has sucked the entire life out of me, so your life is just as important as hers. I wish I could take my own advice , but seriously, you’re gaining nothing by putting yourself on hold. I have gained nothing. All I’ve done is lose my own sanity and my own health.

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Reply to Hopiegirl

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Thank you so much for your response. It was very helpful and greatly appreciated.

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Yes, most have put off doctor appointments and even surgeries. Since your relative is in a nursing home, make them aware of your surgery and approximate recovery time. Leave contact information if changed or if another relative can temporarily help. Also advise relatives of your plans and suggest that it would be great time for them to visit if they can take vacation. Then go and take care of yourself. Good Luck!

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Reply to MikeinTexas

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Thank you so much for your response! It was very helpful and greatly appreciated.

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Yes, your life is put on hold while caring for a loved one. Now I find it daunting to catch up. I also lost my driver, my husband, that is needed for certain appointments.
Don’t follow my example. Find a way to put yourself first even for a few hours on a given day.

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Reply to Windingquilter

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Thank you for your response. It was very helpful and greatly appreciated.

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I have to say - being a Martyr and neglecting yourself won't end well for you in the long run.

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Reply to dkiely33

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Thank you for your response. It was helpful and greatly appreciated.

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Are you micromanaging care of your LO who staff can be in control of their safety? After all, a SNF has nursing staff that can communicate to you of a particular incident. There are ambulances.
I was away several times for my aunt and mom. I left notice that during an emergency, I would be available by phone to acknowledge any need to go to the ER. it did happen when I was on a trip several hours away and I did not drop everything that day. When I was out of country, my cousin was the back up for emergency needs.
If an emergency happened and one of them needed discharge the department would and could handle return transportation. I was also POA so that I could handle any bills that incurred.
Is there any compelling reason that you could not handle communication other than the short time you would have anesthesia?

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Reply to MACinCT

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Thank you for your response. It was very helpful and greatly appreciated.

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I just missed 2 of my appointments this morning. Mom has dementia, and I have been doing my best for her, but not keeping up with my health

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Reply to MomsBoys2

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Cant you get home health aides to come in for a couple of hours once in a while to cover you?

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This might be an over simplified answer but perhaps a good analogy. Have you ever flown on an airplane? What do they say to do if the oxygen masks drop? Our first reaction is always to take care of our loved ones first. We think of ourselves last. The flight attendants tell you the correct thing to do is to put YOURS on first, THEN assist your loved ones. You can't be of help to your loved ones if your faculties are diminished because you were not given the oxygen you need to survive.

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Reply to Nyles1

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Thank you for your response. It was very helpful and greatly appreciated.

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I think most of us can lose track of ourselves when doing the day to day caregiving even to people with pleasant personalities. I have been in a situation with my own family, and believe you me, it was one of the most thankless situations I had ever been in. I've written about my situation in previous posts. That was almost forty years ago, and I still have nightmares about that situation. I'm just now coming to terms with the way my family treated me. I think in my case, I've suffered from severe trauma and PTSD. My mother was horrible to me at times when I was growing up. My parents had a hellish marriage at times and it was extremely bad when I graduated from high school. She was extremely unhappy with her life and was saddled with a bad marriage and a severely disabled child. My parents reasoning was that they had already appointed me when I was a child to later become my sister's caregiver after they died. So, in other words, they had parentified me from a young child.

Take care of your health. Caregivers are usually in the worst health because of constantly putting off surgeries, and other needed mental/healthcare to take care of someone else. No, their life is not more important than yours. You are taking care of them and doing a good job at it. However, who will take care of you when you need it?

Looking back, I worked for a horrible staffing agency and was promoted to a staffing coordinator making about thirty dollars more per week than when I worked the fields as a home health aide. The agency paid me peanuts. I was on-call constantly and not being paid extra from the company. The company lost its medicaid accreditation because of fraudulent billing practices that was uncovered during a survey. Later, I found out that I was hired to help clean up the mess the former management team had created. On top of all that, I was going to be out of a job. I was stuck with my sister, daughter and a house that dad refused to repair. I lost the job and pounded the pavement going on fruitless job interviews back then while drawing unemployment. I finally landed a job that lasted until I retired.

To people who have quit their jobs: Go back to work. You will need your income, medical insurance, and eventually retirement benefits. Don't let your love one guilt you into giving up your job with promises of an inheritance. This rarely happens. This is an old manipulative ploy to keep you in a situation that will cut time off your life. As their life gets smaller, so will yours. No healthy thinking parent will expect you to give up your life to take care of them draining you of what productive years you have left.

Do not give up your independence. Many caregivers ended up homeless after their loved one passed away. This doesn't include the greedy relatives who are willing to sell the family property to get their fair share.

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Reply to Scampie1

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Thank you for your response. It was very helpful and greatly appreciated.

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To answer your question, YES!
I think nearly Every caregiver neglects their own health needs when taking care of another. And we all hear the same empty platitudes that we need to take care of ourselves, and we know that.

However, from what you describe, Why are YOU feeling responsible to care for your loved one IN A NURSING HOME? That is the job of the nursing home!

Go get your foot surgery! Call and schedule it NOW!

If there is an emergency situation, you will find a way to get there, IF you need to. And what if there is no emergent situation for years to come? Are you going to wait to take of yourself, just in case?

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Reply to CaringWifeAZ

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Thank you for your response. It was very helpful, and greatly appreciated.

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"if there were an emergency situation"

Like what? Fire, flood, earthquake?
First responders will help.

A health emergency?
Paramedics will help.

An event making you want to visit?
You will use you phone.

To talk to NH staff.
To talk to ER or hospital staff.
To make video calls.

Staff can be found to assist if your LO cannot work a phone independanty.

If the worst happened & your LO became unwell & was expected to pass away, you would find someone to drive you there.

If you could not find a driver, or your LO was expected to pass before you could get there, you will have staff hold the phone to your LO's ear to say goodbye. (Hearing is the last to go they say).

No-one can plan for every scenario.. so that's some.

Have the confidence you WILL be able to problem solve for anything.
Also that you can trust others (in the short time you are in surgery or recovering).

Now, use some of your kindness towards your foot ❤️🦶

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Reply to Beatty

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Thank you for your response. It was very helpful, and greatly appreciated.

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I am taking care of myself to stay strong for my mom {90} who I oversee care in a MC facility {definitely like a part time job}. I am a healthy 73 but still take a month yearly and schedule preventative dental, eyes, mammo , ears and GP annual exams. If I needed surgery I would do it and ask extended family or some church friends to schedule visits until I was well again.Staff can arrange Facetime calls. I also take 1-2 weeks off each year for my vacation to recharge my Batteries…I also cut back to 3-4 visits per week for 2-3 hrs each to clean closets, visit her , take her outside for walks and discuss issues with staff. Mom forgets I visited her! If you become disabled permanently you would not be of help. I am in year 6…this can a be a long road to travel..

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Reply to Sadinroanokeva

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Thank you for your response. It was very helpful, and greatly appreciated.

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Yes I have put off several medical tests that require me to be away for a day and not drive. My wife would require someone to care for her during this time. When you add it all up it would cost me about $1000 just to take a test.

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Reply to Sample

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Thank you for your response. It was helpful, and greatly appreciated.

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Yes, my mental health.

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Reply to Justwow123

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Thank you for your response. It was helpful, and greatly appreciated.

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No, and I would never have done it. When my late husband was a private-pay nursing home resident, I always had at least one vacation or trip every year, usually about a week. Other than that, I was a regular visitor and saw him most days. I originally visited every day for about 6-7 hours, but scaled that back to every other day for about 3 hours a day on the advice of a spiritual director on a religious retreat I attended. I took my husband to church some Sundays and then out to lunch. I took him to his own doctor, dentist, and optometrist. I took him to the salon of the nursing home's hair stylist (she came 2x/week) because she made more $$$ that way. I once got quite sick (possibly COVID-19 before we really knew what that was) and didn't visit for ten days. The nursing home's social worker called to see if I was OK. I proved to my husband and the nursing home that I really cared about my husband. If I needed surgery or hospitalization, I certainly would have done it, even if I couldn't have visited. My life was just as important as his.

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Reply to swmckeown76

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Thank you for your response. It was very helpful, and greatly appreciated.

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Many of us have delayed taking care of ourselves in order to care for others.

Being a caregiver is one of the toughest jobs in the world. It’s so important to find a healthy balance in our lives.

My caregiver days are long over. Mom died in 2021.

I don’t think we fully grasp how much it affected us until we look back. Then, we say to ourselves, ‘What in the world was I thinking?’ I wasn’t living my life. I was just going through the same motions day after day.

We don’t have super powers. We are mortals who shouldn’t expect anything more from ourselves than we would expect others to do for us.

I will never ask my daughters to go above and beyond for me like I did for my parents.

Wishing you peace.

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Reply to NeedHelpWithMom

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Thank you for your response. It was very helpful, and greatly appreciated.

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MY SIL put off a major foot surgery for 2 YEARS while she cared for her mother, along with her brothers, my DH being one.

She walked on this badly broken foot for so long, the actual surgery was far more intense than previously deemed. She's off her foot for 12 weeks. If she'd had the surgery 2 years ago it would have been 4-6 weeks.

She lived as a slave to her mother and got the 'boys' heavily involved. It was horrible, from start to finish. We're just now recovering from the trauma that caring for a sick, angry, mean woman bestowed upon the only 3 people in the world who cared about her.

The reason SIL wouldn't even consider placing her mother in care was the old "If we put her in a home, she'll hate us and she'll die". OK. Personally, I could've lived with that but I'm an inlaw. No voice.

The kids did end up placing her in Feb. of this year. She died 8 days after moving to the ALF.

SIL finally had her surgery, but the damage she did by walking for 2 years on a broken foot has cost her dearly.

Even to have had MIL placed for the 4-6 weeks that SIL needed to heal from the injury was never discussed or considered.

How many caregivers come here to talk about this very thing? Putting everything on the back burner b/c you feel you cannot leave a LO in care for a respite or a vacation, or even just a break?

Now MIL has passed, my DH says he regrets completely retiring so he could help take care of his mother. Hindsight is 20/20. SIL doesn't SAY it, but I know she has some regrets too.

It will take a long time for these adult kids to heal. SIL's ankle/foot will never be OK. That's the price she paid for her slavish attention to her mother.

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Reply to Midkid58

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I'm going to add a little to my post.

My DH is suffering from serious depression, not b/c his mother died, but b/c his life is not what he thought it would be. He was 'forced' into retiring from a job he dearly loved and was fantastic at. I wish he would go back, PT.

Today he has refused to get out of bed. Simply won't talk, won't get up and is thoroughly depressed. I just now went and shut the bedroom door so I don't have to look at him. He needs therapy and better meds and he doesn't have the energy to do ANYTHING. He does this '24 hour nap' several times a week.

I blame the year of intense CG for his Mother for all of this. IF he or his OB had stood up to YS a YEAR ago, she would have been placed in an ALF then. Instead we all suffered from the constant upheaval of our daily lives.

I was badly affected. Our marriage only survived b/c I spent as much time away from my DH as I could. My SIL (OB's wife) has some kind of dementia and she definitely took a nose dive in the year. Not doing well at all, now. OB isn't even speaking to his sibs, he's so over it.

SIL is laid up with a foot that will NEVER be OK.

6 lives impacted in a very negative way. I saw this coming and expected it. No one person is SO SPECIAL that they get to ruin someone else's lives.

My MIL will go down in history as one of the most selfish, hateful women I have ever known.

Even though she's gone--she's not gone.

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I feel you! This Alzheimer’s is worse by the day. We are currently power shopping for a home to move my mother in with us. My doctor wants me to go to the cardiologist because there are heart issues from both parents and I’m always tachycardic when they check me. I couldn’t go. I should have gone but I just couldn’t stand the thought of more bad news. I’m totally overwhelmed. Oldest daughter told me I should have gone because I have troubling symptoms. I just can’t, not right now.

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Reply to Whimsicalwen

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Don’t move Mom in with you . You already are having cardiac problems .
You mother could outlive you , then she would end up in a facility anyway .

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I don’t understand… she’s in a nursing home. Why on earth do you need to go there so often if she’s being cared for by professionals? If there’s an emergency they’ll handle it.

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Reply to ZippyZee

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Thank you for your response. It was helpful, and greatly appreciated.

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Has anyone delayed their own medical care in order to provide continuous care for a loved one?

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