I have been a main caregiver for my mom since she became ill in 2007. I was young then but got her through her illness and she’s somewhat thrived over the years. However, she’s not independent and since I can remember, my sister and I have been the sole source of her care. Over the years there have been crises where she needs constant help, after she got a transplant, after she broke a hip, after she got pneumonia or a UTI. She’s never spent a night in the hospital or rehab center without me or my sister at her side. This week, she developed a foot sore that quickly deteriorated and now we are back to being awake at all hours, making her comfortable. But I just have nothing to give because I just had breast cancer surgery two months ago. I survived cancer to be thrown into this. When I tell my sister I can’t do this, she says to deal with it because we are in for a long haul. I feel hopeless. I survived cancer to be thrown into this? The universe seems really cruel right now and all I do is cry, knowing that my anxiety, lack of sleep and hopelessness can increase my chances of recurrence. Help.
I have just started a maintenance plan for my cancer which is threatening to wipe out all my savings.
I took early retirement over 2 years ago and was hit with the stark reality that mom had dementia.
I decided to try and eke out a small living by doing some arts and crafts but then covid hit and I managed to contract it in June this year as well.
So mom dementia, me cancer/covid.
Mom does not understand or remember that I have cancer or have survived covid and places many stressful scenarios on my plate just about everyday.
My brother on the other hand will listen to me crying on the phone about how I can't deal with all of this on my own. He will pop in for a 2 hour visit and think that that makes it all right.
I have told him that I feel trapped and he needs to take a more active role in dealing with this problem. He phones her every night to check up on her but as mom and I live together, he doesn't get woken up, sometimes 3 times a night to deal with mom's questions, nightmares, anxieties, hallucinations, tears and fears.
During the day it's anger, mistrust and all sorts of hurtful words thrown at me.
It's difficult when you are just trying to get through each day.
I live in South Africa and getting decent care for aging citizens with dementia is a costly exercise. I have no income, my saving are being eaten away by my cancer treatment and I often just think to myself why even bother with the treatment.
But, I am an extremely positive person. I believe it is what it is and so I need to do something about it. I have learnt in mom's case to just ignore some of the hurtful words thrown at me but being a gemini, I sometimes lose it too. As a friend pointed out to me, mom loses it with me all the time, I am also human and also have the right to lose it some of the time as well.
I know my mom loves me and appreciates me but unfortunately she doesn't know who I am most of the time so that adds another dimension to our relationship.
The woman who was my best friend and mother, has now left this world. The person that remains is a bitter, angry and very unlikable person.
I promised her all my life that I would never put her in a home and I know this sounds wierd (considering that I'm posting my complaints) but I would never go back on my word.
Some may say, "You made your bed, now lay in it" and others might just understand that this is the woman who raised me to take in my stride the problems I now face. The only thing that I questions myself on is why my brother who was raised the same way, doesn't feel the same responsibility.
I loved my mom and now that she is mentally not here most of the time, I still respect the woman she was and sometimes feel guilt that I don't like her anymore. It's just so sad.
I know that some grown children will tell a parent they will never put them into a nursing home ... but I bet when that was said, the parent was in good health for their age and didn't have memory problems.
I know for myself, I had zero idea what to expect taking care of both of the parents which was mainly logistical, and I don't know how some people do it being totally hands on. I wasn't cut out to be a caregiver, I had no training on what to expect, I was never around anyone who was elderly in my family, nor had friends dealing with older parents. It was all trial and error which goes against how I work.
There comes a time when our elderly parents needs a village to care for them. I know my Mom did, and the nursing home was pretty good.
You have every right to push back now and to say No. You can no longer do any caregiving for others because now it's your turn to take care of YOURSELF. Sorry mother and sorry sister, but I have to bow out gracefully now and look after myself. I am not 'apologizing' for doing this, either, just saying 'sorry' I need to remove myself from the situation you are demanding me to devote myself to.
You are doing nothing wrong by taking care of yourself. Depression and anxiety that ruins your mental health can lead to a total breakdown in health and worsening of your cancer. Any mother and sister who expects you to do the hands-on caregiving in THIS condition have serious issues of their own to address. It is shocking they would even put you in this situation to begin with. Shame on both of them.
I hope you can remove yourself from this dysfunctional family dynamic right away, without feelings of remorse or guilt, and move on with your own recovery. Let your family know you love them, but that you love yourself more, and have to do what's right for you at this time.
Wishing you the best of luck and good health moving forward
OMG, How could you say in the comments that maybe the sister is tired too and the poster's cancer concern may be seen as her way out?
For God's sake. Why don't we all just call it and say that when a person has cancer we'll count that as a universally acceptable reason to not have to be a caregiver to anyone.
Honestly, the sister possibly being "tired" herself really is not equal to having cancer.
Put it to your sister in these terms. What happens to your sister's life if you take a turn for the worst and can't help? The full responsibility of your mother will be on her.
Also, your mother isn't a baby or a child. No one has to be by her side every moment in the hospital or rehab. You do not have to be up all hours of the night making her comfortable because of her foot sore.
My God, you just had cancer surgery. Who's making you comfortable and doing for you?
Hand it over to your sister. If she won't handle your mother on her own then put her in a care facility.
An empty cup cannot pour 😥
Your words "thrown into this" make me picture someone adrift on a choppy sea.
I felt like that at one time. My goal (when I sought councelling) was to learn to float.
If floating is what you need right now - then float.
Your Sister & Mother can paddle on. Either with continued denial or acceptance they need more help. That is up to them.
Then add to the mix helping one's elderly parent with what seems like easy things, such a grocery shopping... oh my gosh, trying to reach for things on the top shelve wasn't easy. Driving hurt, too. Loading my Mom groceries into the car I had to take items out of the bag due to weight limitations. Every errand felt
like I had spent time at the gym. And I started hating to drive. Then came the panic attacks. It was the stress of doing too much, and the side effects that I was getting from the meds.
Many people, like your sister, just don't understand the physical AND emotional stress of breast cancer. It's different than getting one's appendix removed.
I remember one time my Mom was in the hospital as she had fallen at her home. The nurse wanted me to stay the night with her. I broke down into tears as everything was becoming overwhelming.
Time to either hire from an Agency a caregiver to help out, or check around at the Assisted Living facilities what is available. This won't be easy, it depends on how your Mom feels about the change. And there is still the pandemic. For my Dad, he loved the place. He liked being around people closer to his age. Of course, it all depends on Mom's budget. Don't you and your sister pay, you will need that money for your own rainy days. If Mom cannot budget for Assisted Living, one can check with Medicaid [different from Medicare] as Medicaid can help pay for the care if Mom qualifies.
Hope everything works out so you can recoup on a smooth schedule.
At this point in your life, you need calm, regular hours, nutritious meals and plenty of sleep.
If you are having chemo, you damned sure don't need to be in a hospital, or around an open wound.
Tell your sister your health can't handle the strain of caring for your mom any more. Offer to help her find a SNF for her; research Medicare/Medicaid options, locating additional resources to help. All of which can be done from your home, at your convenience, and when you have the energy. Big hugs to you.
Cancer and chemo, well, any kind of cancer tx really affects every single cell of your body and it takes a lot out of you. I am almost 18 months out of chemo and I STILL have days where I simply do not feel well and am functioning at about 50% of what I used to. If I had to add in CG for my mother or MIL, I simply couldn't do it. Things have slid so badly here at home, I probably will never 'catch up'.
I was always the first one in line with a dinner, offers to babysit, clean, whatever when friends or family were in need. Now I can't muster the energy to keep my own family close and do what I NEED to do, much less be helpful to someone else.
I'm fully aware that at age 65, I'm going to start slowing down, Cancer just bumped that up by about 10 years.
Time for you to graciously step aside and help find paid care for mom. I know you don't want to dump this on sister, but I know when MY sis dumped her load of CG for mom on me, we all survived!
No guilt. That's just negativity flowing through you and you need to take care of you.
The fact that your mom has not been alone a single night in over 14 years---wow, either you are begging for sainthood or have a rather over the top sense of obligation to mom. That's incredible.
BTW-what is mom's living condition? If she has to have 24/7 care, a NH is a more appropriate setting for her than in home care from you two sisters. Maybe if you step out, sister will see this and mom can be moved to a better long term living condition.
At any rate--good luck to you.
Do you have anyone helping you out? Like a housekeeper coming in to clean once a week, or even a hired companion to do your shopping and errands?
You need a break too.
I will assume Mom is a diabetic. I hope you are not trying to treat this sore on your own. It needs to be taken care of by an RN that knows woundcare. You get a foot sore because of bad circulation. Gangrene can set in and then its a leg amputation to keep it from spreading to the heart. Taking care of it can be done with "in home" care.
Now you. You have had surgery that is pretty recent. You probably should not be lifting or taking on any weight. If you were or on chemo, that takes awhile to recuperate from. It could take 6 months before you start to feel yourself. (Hopefully MidKid wil, chime in) And age has a lot to do with how you recuperate. So, you have to tell your sister you are just not strong enough to do some of the care Mom needs. That you tire easily . Tell her your willing to do this for Mom but you can't do that.
That foot sore is serious. Sometimes they don't heal with the best of care. Your Mom maybe looking at an amputation and that will depend on her health and age if its done. If done, she is going to need more care than you can give. My two friends were in their 60s when they had amputations. Later followed by kidney failure and dialysis. One passed at 63 the other 69.
With that being said your 14 year sentence in caring for your mother is over. Though from your post it sounds like you have been taking care of her a lot longer than that.
Even prisoners get parole. You are a cancer survivor but stress can lead to more cancer or a heart attack or stroke. None of which you want.
Time to have a sit down with mom and sister and put it all out there. It is time for you to step back from moms care and just be her daughter again and help her get the care from trained professionals that she needs.
You will feel guilty that goes with the being a good and compassionate human being. I wish there was a magical cure for guilt but know you have nothing to feel guilty about.
But the 'watch' is not really *ended*.. the season of hands-on caregiver may have ended that's all ... and that's OK! Life brings change. No guilt is needed.
Your mom needs a facility if she needs so much care, if your sister doesn't like it, she can take over full care.
What kind of loved ones don't care that it is costing you your own life to prop them up? The kind that can blow off in my opinion, including your mom's other daughter.
courage!!
“The universe seems really cruel right now and all I do is cry”
hug!!
i believe i understand how you feel.
i would maybe phrase it differently:
even though your mother might be very loving/kind towards you, she should understand that you’ve helped for years, and that this has consequences on your life.
if you can’t do more…other solutions are needed.
in a sense, your mother should be insisting: live your life!
in my case:
i don’t want to do more. i’ve told my LOs. i want to live my life.
i really hope you can find good solutions, hire people, etc.
it needs to be a solution where you’re free to live.
as many people have warned us, life is short.
hug! we must love our family AND ourselves.