Marialake Asked April 2014
What is the one thing that bothers you the most about caregiving?
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The main thing I’ve seen, is entitlement. If we live long enough, we age. That’s a given. But, it seems as if there are aging people who aren’t aware of this and, when they become aware, sometimes, they’d like to have free, private, 24 hour care, with a smile, from a person who is still working. While I know many people, indeed, do this, for an aging loved one, I don’t tolerate entitlement. But, I can see that there are aging people who feel they “assign” people, when it’s an appreciative ask. It is the potential caregiver, that makes the decision, including what they are able and willing to do. It is not, or at least should not, be slavery. I find it incredible that people who may have retired early, without a medical or financial plan, seem to become immediately and entirely “unaware” of other people working and pursuing their own lives. That they almost wonder where people are and what they’re doing — they’re at work.
There appears to be butter indignation, when they’re told no. Some of them, will do nothing to attempt to mitigate their circumstances and, instead, may worsen them. They may not actually want use of public resources available to them, because they feel they “decided” the burden would be placed upon a singular person. In addition, sometimes, their family’s are apart of this frame of thought. They may have that aging relative move to an apartment complex, where they “choose” a neighbor, who they feel would be suitable to provide free care, so they don’t have to. They remain hidden, until their relative passes and appear, when it’s time to read the Will. Only those who understand the dynamic, are able to avoid it. But it isn’t without pressure, coming from other neighbors, who also, willfully don’t know any better.
It is important, if/when it can be afforded, for a person to obtain long term care. It’s also important to note simply feel you can retire early, without doing math. As I’ve recently witnessed, a neighbor of mine did both. Knew she was going to become ill, retired early, without enough savings to qualify to do so, even adopted 2 thoroughbred dogs for thousands of dollars. When I spoke with her, 4 months ago, she told me she would soon be leaving (evicted), because she’s running out of retirement. Her family wasn’t helping her, but they all seemed to think taking care of her affairs, was to usurp my life. She died a week ago. Sadly, lucky for her as, she was probably weeks away, from becoming a very sick, very homeless woman, while heading into winter. Pretty sure there are a few people, who think primitively and think all of that was my fault. Good thing it doesn’t matter to me.
I've been told - by friends and healthcare professionals - "Let me know and I can help you." Ummm, OK - so when my hubby is incontinent overnight and I find out in the morning, I can say "Just sit in your filth until I can find someone who can drop everything and come here RIGHT NOW".
(mic drop!)
And unfortunately it is all solo because there are nowhere near enough elder care resources in our area. He had been in a subacute post-rehab unit for 2 weeks when COVID struck in 2020. He needed a full-time advocate to make sure he got basic care - and food! So when the facility blocked all visitors I had to get him out of there and have been responsible ever since.
I feel really bad for elders who do not have an advocate!
Thank you for letting me vent...
And edit - he is 81 yo; I am 72 yo -
Tried to get respite care-they couldn't take my husband-a case of COVID had popped up. Maybe in a couple of weeks can try again.
He should be giving you huge hugs every day.
I guess the hardest part for me is trying to help my dad while he screams at me then I end up screaming back and walking away because even though he has dementia he has always yelled since I was a kid and I think that it just triggers me. He is the only person who can get me so upset. Then I feel like a horrible person. This process repeats over and over and over...
That, and the poop, I cannot handle the 💩 that gets smeared all over the place. We actually have to remove the toilet seat and pressure wash it because it was so bad. Hubby wanted to trash it and buy a new one but it’s the third one we’ve had to buy in a year! She would just plop down instead of sitting on the toilet and break the seat. The one we pressure washed was 2 weeks old. PT tried to work with her and she was able to sit correctly but as soon as they left, the plopping would be back.
I remember reading a poster who said they hadn’t had a mental break (total relaxation, no worries) in years. Maybe me, too.
Endless worrying isn’t good for you. My blood pressure was out of control when I was caregiving. I had to find ways to reduce my anxiety.
I have recently decided to "place him" in memory care as I am about as overwhelmed as a girl can get. This is not like calling for a hotel reservation! You, and your Loved One, must be approved! So far I've had 2 turn-downs because my husband is deemed "disruptive and somewhat violent". Please...... He's a guy, he's afraid, he's unsure of everything, he's not able to comprehend conversation, he relies on me for everything. They arrive, sit on our sofa, ask me questions about him. He roams around our house because, after all, it's his house! He walks past them and they are scared out of their wits! What's up with that? So at one of these, he erupts when he's suddenly approached, fight or flight response is just natural, at least in my thinking. So he's deemed violent, but out of that encounter I find out about a calming drug. In the last few months this has changed our life, he's happier, I am able to think again! Why isn't this drug talked about and suggested by caregiver's, doctors, anybody? It could have saved us a long time ago!
And so, I keep on keeping on. But he has to go somewhere else, I need to find someone who's willing. I don't need help from national "find a place" people, I just need someone at a current facility to care enough to take him in the space he's in now. Just care for him like I do, listen, watch, help when needed and let him be in his new world.
My heart goes out to all of you here, I know what you're going thru, I have either been there already or am going along with you into new more horrible areas. We're all going to lose our patients eventually, just hopefully before our own lives are over. Thanks to the Forum for letting me vent a little, this is the thing at the moment that bothers me the most. Give your patients a little space and take them for what they are. Think how you would like to be treated, imagine not knowing what anything is anymore. Imagine someone having to wipe your butt, having to try to eat without knowing what it is, imagine listening to people talk to you in a foreign language all day long! It's hell for them, too, not just us.
You know, many times when I come to this place (this website) I do it out of true despair and only find comments filled with anger, resentment, and “I need my life back” statements because of the situations they are living. All of which is understandable, however! we, all of us, specially those whose life became handicapped in some way, shape or form, are deserving of some degree of understanding! even sympathy. The way you describe the new world your husband lives in is so kind, you try to walk in his shoes. You try to be and are his best friend indeed.
I care for my mother, and like you I just NEED, desperately, someone that with human kindness did what I do, be with her, make her feel included (she lost her hearing and has tinnitus among hundreds of other ailments. But the lack of hearing completely isolates her); Why is is so difficult for a caregiver to find conscious help! Why do we end up being the ENTIRE WORLD for one person…and the entire world cannot take a break because there is no one that can take over!
I understand you. I feel for you. We both are there, have been there or will be there.
Just know someone else with a similar mindset is living the same situation. Thank you for that message that obviously talks about tiredness and frustration, but also about understanding and love!
My mother lived in our home for 14 years. Towards the end, I was burning out too. I understand how you feel.
Caregiving full time is very challenging, stressful, difficult and exhausting!
My DH needs 24/7 care due to brittle diabetes, incontinence, bleeding wounds, heart attacks and falling risks from a traumatic brain injury.
We have wound care, PT & OT 2x weekly which are invaluable. But I need to get away, alone, for at least a week after 19 months of full time care following his brain injury and surgery.
has had fractures, utis, numrrous cuts and scrapes - didnt mention the loss of friends because of limited mobility
This happens to many women.
This doesn't exist. She calls me every day wanting to talk it to death for hours but I can't wave a wand and make her perfect living situation happen. I can't seem to get her to realize she'll have to let go of at least one of these "wish List" items. Anybody have an elderly parent in a place without a garage? How's it going? We live in the mid-South so storms are more of a concern than cold weather.
Only thing to say is each day is one day closer to your ordeal ending.
I wonder if most parents who did care for their parents, if they expect it from their children. I have told my girls that I never expect them to do caregiving for me.
My caregiver days are over but I felt like they would never end. It’s a hopeless feeling.
It seems right now my life is CO-OWNED.
Having someone in my house ALL the time.
No alone time.
Having to redo what she's done.
Repeating everything I say, multiple times throughout the day.
Cleaning $hit off the toilet and the floor.
Having no support from siblings
Oh... Just one... I have so many....
I agree with everything you posted except about the siblings, I have none so I do the above alone.