I wrote this at 3am when I was feeling utterly overwhelmed and in despair. I wish someone had told me the honest and harsh realities of being a primary family caregiver. Anyone else feel this way?
My editorial warning on caregiving
“It’s kind of like taking care of a child.” I've heard it. I’ve said it. I don’t have children, but I am confident I can make the bold statement that no, it is not like taking care of a child. You can choose to have a child. Family caregiving is not a choice. It is thrust upon you and ridiculously expected.
I'm positive there is joy in raising a child. I am also positive there is no joy watching your loved one slowly die without the dignity they deserve. It is heart and soul crushing, not rewarding.
Meanwhile, your life disappears. The person you have always known you were becomes in question. The where, how and why of fitting in outside the confines of the caregiving home fade away because you can rarely leave the confines. The world moves on without you. All you can do is helplessly watch.
Say good bye to a good nights sleep. Interrupted sleep becomes the norm, setting you up for mental and physical ailments you will have no time nor will to address.
The advice you get is, self care. Trust me when I say, there isn’t enough self care to properly deal with the physical, emotional and mental toll family caregivng will take on you. No walk. Nor yoga or meditation. No hobby or hot bath. Body, mind and soul are pierced, deeply.
“What your doing is so full love.” That may be, but how it really feels? Desperate. Nails on the chalk board. Suffocating. Death of your young, healthy soul. You get to the point of just wanting the person to die so they would not be suffering and you would be free, which quickly turns to feeling like a pile of selfish sh—. Say hello to low self esteem.
And I haven’t even touched on the firestorm of childhood crap it brings up to be taking care of your elderly parent. Let alone the all encompassing grief of witnessing the slow, sad demise of said parent.
Oh, and your marriage. Yeah. That will take a direct hit as well. No matter how supportive your spouse is, your marriage will not be the same. It will become a struggle to find time just you two and eventually the only thing you have to talk about is caregiving. The threat of growing apart becomes heartbreakingly real.
No matter how much guilt you feel, move through it. Do not put your life on hold. Do not live the life of an elderly person when you are not in fact elderly. Because that’s what happens. You eat dinner by 4 and go to bed by 8, with no substance to your day, just endless motions of caregiving.
Talk to your parent about options; help in the home, assisted living, etc. When mom moved here she stated she never wanted to go to assisted living. We agreed. Now we are stuck is this sad, perpetual purgatory that could last for years.
My warning to you, to everyone....if you don’t have to, don’t do it.
(((Hugs)))
Every time I write a check I have an anxiety attack as I watch her accounts go down. We told my mom she had enough money to stay in her house (24/7 care) for a year, but at what point do we start looking at options? We're still fighting to access a safety deposit box and bank stocks. I have nightmares about this.
And then there's the "normal" work/life/COVID/grown kids stresses and worries.
Thank God for my sister. She lives near my mom and handles some of the daily chores. Like so many here, our brother has decided his involvement is optional. Instead of just being angry, we've sent him very specific requests--things we need him to do. Which he has ignored.
It's hard not to be bitter.
If she has no assets, has she applied for Medicaid? She might not want to go to assisted living, and it would be hard for you to have the discussion with her, but you could have the discussion; and tell her you can no longer do this. Had you known, you would not have agreed perhaps but because she was adamant, you caved in. It is not too late, especially now that the vaccine is becoming available.
I am new to this forum and needed to reach out for some support. I am an only child caring for my mom on hospice and dad with early dementia and chronic pain with no help from anyone except for the hospice nurse who comes twice a week.
I am running a household and caring for them and mom continues to get more and more sick from end stage copd empjasemia. It is a heavy load.
I was a caregiver before I entered this situation and thought no one could do a better job than me. I was wrong. It is so different when it is a job compaired to when it is your life. I have lost the empathy and compassion I once had. I do everything in my power to make them as comfortable and cared for possible but my heart isn't into it.
I am extremely passionate and giving but have been feeling so lifeless and mudane. When you spend time around dying people how do you feel like you are not dying yourself?
I like how you touched on the childhood scars that resurface. My parents weren't anything but verbally abusive but the neglect runs deep. Here I am attentive to their every need but asking my dad for a ride somewhere when I was a kid was like asking for a limb.
Mom came under my care a couple of years ago when she almost died from a septic infection. I have fought long and hard to take care of her the best I can but it is to the point I have no control over it and managing her symptoms is becoming a nightmare. She often is out of breath and it is unbelievably Scarry to watch someone not be able to breath despite the morphine.
At least I don't have to worry about the stress it is putting on my relationship because I am single. A double edge sword. No relationship to give mantinence to but no hugs and being told everything will be ok.
I often say I wish I had a job so I wouldn't have to work so hard. I also proclaim to be a firefighter because I put out fires all day.
Apparently it has been said there is beauty in hindsight. It has also been said by others I am an angel. Why doesn't it feel that way?
One beautiful thing to come of this is being able to accept my mom for the mother she wasn't and love her for the person she is.
With mom's passing on the horizon I worry about how I will care for dad after. I am so scared of the future but so glad I made it through today. Just to wake up and do it all again tomorrow. Thanks for your words and thank you for listening.
And trying to walk.
They wouldn't listen to me that the goals were unrealistic..... Used up all medicare rehab days.... 100 DAYS I KEPT TRACK. OF WHRN MEDICARE WOULDN'T PAY AND SHE WAS OUT WHEN MEDICARE RAN OUT..
FROM THERE TO ASSISTED LIVING WITH AN ENHANCED LICENSE.
SHE HAD LONG TERM CARE INSURANCE BUT THE SNF WOULD NOT SEND THE RECORDS TO THE INSURANCE COMPANY.
NEEDED AS INSURANCE HAS ZA 100 DAY ELIMINATION PERIOD.
CALLED A LAWYER AND HE ASKED IF I WANTED TO HIRE HIM FOR 400 dollars an hour, to try to get the records..
I did not hire him for this.
Paid out of pocket for assisted living.. And a. Few week stay in a nursing home
Now the LTC policy is past due for Renewal but they will give me a grace period until a certain date.
Over 4400 dollars premium for another year...
Mom. Present at him with hope.
Dementia but who knows how much longer and if her needs will increase beyond my capacity.
Suggestions would you take out another year of LTC it better to just save that money?
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But a doctor warned me of it when I was about 18 or 19 years old, especially as an only child. Feel like my own interests get tapped away...... Seems like not enough space.... Always have to be either there or even upstairs it's hard to hear calls.... Some suggest a baby monitor. I've been the assisted living. Nursing home routes for mom....... Then worry.. Pandemic isolation adds to it...... Costs and often say was that really necessary.,... I get the feeling of big business out there to take care of the elderly........ I got burnt out one night with diaper changing and c difficile contamination.
I only have two hands! Called 911...... Nurse sad she has diarrhea and smells like c diff... Tested positive...... From there a nursing home.. Outrageous pricing but I thought okay end of life comfort care..... But mom lived and I was glad when social worker said perhaps take her home..... So at least got a refund from the outrageous two onth fee on admission and paid for one other month... But took her out after less than a month and got a lot of the money refunded....... Now. Glad to have her home on hospice...... But certainly can relate to feeling what about my life?
Between COVID and all the snow we've been getting, it's been hard to do anything but sit at home and drown in my thoughts. Self care.... if I read one more article on self care, my head feels like it will explode! My brain tells me this is not for the rest of MY life. But how to comprehend that this could be yearssssss. I do have a good support group. I'm lucky to be able to do this.
There is no amount of mental preparedness that can help understand what it actually means to be the primary family caregiver. I have to keep my faith that I have the strength to keep going. This is NOT the rest of my life.
I just hope that I will have time to go over end of life decisions with my children before it's too late. I do not want this to be part of their life.
So as I ramble on... it does help to see the words.
Sending love to all the caregivers here!
Stay safe & Stay strong!
wishing all peace and happiness on this bumpy journey.
What I find very difficult is even when there is a little break, like going out to run an errand, or getting coffee, you still have the task at hand. Or watching a nice video, and then they need something. You can't enjoy things without them in the background.
Whenever I step outside, I try to just soak up the nice scenery. It helps for the moment.
I hope you are successful with whatever you choose to do. All the best.
“Family caregiving is not a choice. It is thrust upon you and ridiculously expected”. That's true... INITIALLY! The early days of caregiving may not be too difficult, but as the disease progresses, the needs of your LO increases to the point you loose your own life because of self imposed obligation or promises. So eventually it does become a choice. The choice to care for both your LO and yourself. Set your boundaries. Know when to say “I can't do this anymore”, “I give up!”
“Meanwhile, your life disappears”. Yes, it can and often does. That's when you need to seek outside help from home care to adult day care. Call you local Area Agency on Aging to get some help. I've posted this quote before: “Too long a sacrifice can make a stone of the heart”- Wm. ButlerYeats
“What your doing is so full love.” Caregiving starts with love. But unless you set an exit plan, it will eventually become frustration, anger and maybe even resentment. Know what your limit for caregiving is. When that time comes (which may be now), seek other options for your mom.
Marriage- “That will take a direct hit as well.” Caregiving can be a family affair. The stresses and emotions of caring can not only affect the caregiver, but the spouse and children as well. Another reason to know when to say when.
“No matter how much guilt you feel, move through it.” I'm not sure what your guilty of. Are you not doing enough? Are you guilty of the toll it's taking on your life? Your guilt is undeserved.
“When mom moved here she stated she never wanted to go to assisted living. We agreed.” Ahah! We arrive at the sole reason for all your other statements. NEVER, EVER promise your LO that you will never place her/him in a care facility. You can promise that you'll always care for them, but don't limit your options. Now you feel you're in an everlasting purgatory. However, you've already made that promise, now what? You just might have to break it. It's either continuing in your everlasting purgatory or having a frank discussion with your mother about why you have to break your promise.
Look into Assisted Living or Skilled Nursing and explain to your parent that you simply cannot live like this any longer. You've done your very best to be a caregiver, but her needs have become too great for one human being to manage. And that's the God's honest truth, and why I placed both of my parents in Assisted Living in 2014. My dad passed in 2015 & my 94 y/o mother is still alive and living in Memory Care now. She'd have killed me long ago had I made the mistake of taking her in to live with me, or me with her. I knew that right from the get go.
Wishing you the best of luck taking your OWN life back now & crying Uncle.
My mother, who has moderate dementia, lived with us for 8 weeks. That was enough time for me to become bedridden from the stress.
It’s okay for you to change your mind about something that clearly is not working for YOU. Caregiving has to work for both of you. Give yourself permission to make a change. As another poster here says, YOU matter, too.
with blessings,
with blessings,
I will agree that caregiving takes a lot out of you, and not everyone is capable
- for whatever reason - to do it. And we should not be judged if that is our
individual case.
However, I take issue with the blanket statements you make here. Just as I have taken issue with previous posters who say "never place your LO in a
facility". These blanket statements are not productive, they are often
untrue, and they can cause many hurt feelings and feelings of guilt/remorse.
Indeed, your statement about marriage taking a direct hit - that SO wasn't true in my case. So very untrue. Now, I understand that I am married to a rare man - for whom I give thanks every day - but to just throw out there that no marriage can survive is doing other caregivers a disservice.
It was not fair of your mom to have you make "the promise" about being placed in a facility, and I'm sorry that you are trapped, either by circumstance or
design. I hope you can at least find some assistance to take some of this
enormous strain from your shoulders.
Iwish you peace going forward.
with blessings,
It’s incredibly hard. I’m so sorry that you are struggling with this situation.
Please don’t hesitate to seek out help. Look into placement.
Speak to a social worker to help you plan future care.
Speak to a therapist to help sort out your feelings. I did speak to a therapist and it helps tremendously.
Wishing you all the best.
Take care.
I also appreciate your honesty and care. I am beyond burned out. I have a counselor lined up to see soon, but again you are correct. I can not go on with the way things are. There must be a balance between caregiving and my life, between being a daughter and being a caregiver. Thank you for your encouragement and support to get my life, my health back on track.
with blessings