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I am 76 and take care of my husband who is 78 and has advanced dementia. I have tried going the caregiver/companion route and honestly it has become more trouble than it's worth. The last 2 quit after he pushed them or screamed at them. I have no life of my own but do not plan to put him in a memory care facility until he no longer recognizes me. My GP has told me that he would not be accepted in a MC facility with this behavior. My own health is tenuous as I have a chronic disease that could hospitalize me with little notice. In the event, he will go to MC immediately ... no other option. We have no children and my step son has vanished as he now knows that he's not in the will. I plan my day around 3 meals, shopping for food, cooking food, cleaning up etc. The one bright spot is that he falls asleep early and then I can relax and read or watch a movie. Otherwise, he's with me 24/7. I can't leave him as he goes out and gets lost. I realize that none of this is productive sharing ...just venting.
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Msblcb Sep 2, 2024
Glasgowgirl48,

I waited to place my mom when I thought she did not know me. It was easier on me. I cannot imagine the heartache of making that decision for a spouse, However, in retrospect, I think my mom would have adjusted better had she been a little more clear headed. She would have made friends easier and enjoyed the activities more. I waited too long. Just a thought. I wish you the best is this difficult journey.
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The thing that bothers me most is the ever changing situations. You think you have one thing down and then it changes and you have to pivot in a different direction. I really learned to roll with the punches or I try at least. I didn’t realize that that was what was going to happen and it feels like a roller coaster most of the time. My MIL is a big fall risk but in her mind she thinks she can still get up and go, and of course forgets to use her walker! The bed ridden stage is fast approaching and I am terrified of this as I can’t move or pick her up on my own! Good luck with your situation just breathe and find your inner strength!
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JanPeck123 Oct 21, 2024
Check out invacare or hoyer lifts and slings that are used for lifting bed bound patients. Hospice or Medicare may be able to pay for such.
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My FIL & husband are both in my care so it frustrating my FIL is mentally ill and has some sort of early demitia , so he calls me his wife At time get super mad at my husband(44y stroke survivor) for being my priority and my boys for being 5&2 and bonus parent. I made a binder he reads daily to remind him of what's happening but he could care less most days he's sad, he lost my mil in May this year , mad he's with our NYC and in Az but my BIL doesn't want no part so. We choose to bring him to keep him with family most days are okay medication change helped but I'm burned out your not alone
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I care for two men and it's burn out I made a binder with a schedule for my FIL , and BOUNDARIES
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At the moment it's knowing that I have to make decisions about everything..... and I'm scared I'll get it wrong.

My husband has a condition similar to Parkinsons plus depression. It's getting harder for him to leave our apartment (he uses a wheelchair once we're out) and I know we're going to have to move into a more ADA-accommodating place soon. However, neither of us want to* and it's manageable for now. But I'm afraid that he'll end up in the hospital again after a fall and won't be able to come home unless we move, so I'm searching.

He says whatever I decide is fine, but I've been The Responsible One my entire life. It'd be nice to really share the burden, but he just can't. It's exhausting. Fortunately, I work remotely so at least I'm here when he needs me.

[*I've long joked that instead of moving everything, I'll just pile it in the front yard and light a match. Not so funny any more....]
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JoyceFamily1223 Aug 27, 2024
Your doing right keep pushing
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Short term - reward yourself with something that makes you happy after you interact with your MIL. Also, consider getting a respite caregiver from an agency; there might be a public agency that provides this in your area.
Longterm - We need to fight to get state agencies to prevent burnouts by sharing the burden of care for elders and children and not leaving it all to family caregivers to deal with.
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*
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I left my job and my apartment when my sister called me crying saying she was going to lose her job if she couldn't get help,so I left my job,my apt,and my kids to come to Tennessee. When I got here me and my fiance took care of my mother 24/7 and the sister that begged for my help did what my other 2 sibling did, they went on living their life while I gave up mine to be her caretaker 24/7,My mother had the best of care,at times she would cuss me or get mad and wouldn't talk to me,I spent quiet a few times on the front porch crying,I wouldn't get a breath in before mom would call me to wipe her,she got bathed everyday either shower or she would want to stay in her chair and wash off.My mom sexually abused me as a child but I didn't let it keep me from taking care of her, the care was getting harder because she was showing signs of demincia and if you didn't agree with her on what she was hearing she would get angry with me,after2 1/2 years by the way toward the end she gave up on walking and I was in my 2nd year of being diagnosed with fibromalyga, After 2 1/2 years with no break because she also kept my fiance on his toes,we were more her servants than anything else,she passed at the age of 82.Now that she has passed my sister wants to evict us from the house,my sister has a home,I felt my home as I was told by my sister because I was the only one who helped her she was gonna give me the house,but now that mama is gone my sister wants us out of the house,I'm devastated she would do that to mem
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JoyceFamily1223 Aug 27, 2024
Your a beautiful person thank you you keep that house my bil is the same my FIL is still here he doesn't call nor text only on the 19th to ask for money he sees is owed
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Samatha, welcome!

But you are a daughter? With endless love, patience & time to spare!
You must provide all the entertainment for for your Mother.
You must strive meet her every need. To do every task she wishes. To ensure she is happy everyday & never bored.

Yes?


PS I HOPE you are screaming out a loud NO. I DO NOT! as you punch a pillow.

If not, try it!!
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I am the sole caregiver for my mother (92yo). And I work 3 12hr shifts a week and I am 58yo. I am tired. I want my life back to being my life. She expects me to take her everywhere I go (she'll "wait in the car for me"). I can't go grocery shopping, to my doctor or even for a walk without her demanding she come along (she can only walk about 50feet before being exhausted). She also expects me to drive her around out in the countryside EVERY DAY OFF I HAVE. I feel like I work 7 days a week between work and being home with her. I don't want to retire because 24/7 with her will land me in prison or in the ER. LOL. And she complains/whines until she gets what she wants from me. I remind her there are plenty of people in SNFs that would love to trade places with her. ;)
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Anxietynacy Aug 21, 2024
Sam, I just want to hug everyone I here that writes in with the same feelings I had 6 months ago, burntout outta my mind.

Stick with us , will help ya figure this out. Life isn't perfect, but much better when I realized I don't have to do it all!
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I'm being cared for but I'm not being heard by my caregivers. I have a hiatal hernia among other things but I need a soft food diet. I showed them that if they have to cut up the food with the side of a fork I won't be able to safely swallow it. So they bring me chicken breast. What? Or a crunchy potatoe casserole. No no! I can't eat Chilli beans they're not soft enough. They still bring them along with acidic juices. I've told them time and time again. I've written lists of foods easy to swallow. They speak Swahili so I downloaded a talking translator app and used that.
They acted insulted and focused on each other's facial expressions more than my explanation suggestions and problem solving. Still they act as if I've never voiced my concern. When they come to help me they hurry as if they need to be anywhere other than with me.
I've sat down and told them exactly how their actions and lack of make me feel. They act like they're listening and then they think that after our talk all is better. I tell them No it's not. Once I see that you have heard me and are making the needed changes then I'll start to feel better. Then when those changes permanently take place of the problems then and only then I'll feel comfortable. So far my words fall on deaf.ears and the answers I get are YaYaYa yes yes I understand as they quickly busy themselves picking up or straightening up shelves Then they hurry out my door with a quick ARE you good? And before I can answer they are gone.
My disability is new. Being dependent on others for everything is new. Not living alone is new. I hate it here. I dislike being old but I really hate being old and broken and all alone in a house full of people. I'm stuck here and I don't want to anger those who help me transfer to the commode etc.
So not being heard not being fed not being treated as a human being is what I dislike most about caregivers.
I need help. That won't happen anytime soon. Today 3 meals were served to me today I ate only one and that was at 7:30 am. It's 10:27 pm and I'm hungry.
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MargaretMcKen Aug 20, 2024
Sadnstuck, you need to post this as a new question, with more information. How old are you, where are you, what is wrong with you, how did you get there? “I have a hiatal hernia among other things” clearly isn’t the full story. Unless you just want to vent about how awful you feel, you need to start your own thread. It’s free, why not?
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So every time a nurse comes over to visit my mom says how beautiful they are and she just goes on and on about it. Not one time has she told me or said anything about what I do for her. She actually said when I was cleaning her in the shower as she is pooping she says I do not know how you do this. I wouldn't do it. I asked her so you would not do this for your own mother she said probably not. I am looking to move her into a Nursing Home as I am 63 and have no life she does not want me to go anywhere except stay here and be at her beck and call. My brother lives down the street but she does not want to bother him. I get so angry at times.
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waytomisery Aug 11, 2024
You can tell your mother you are no longer going to “ do this “.

That conversation in the shower was a back handed compliment designed to manipulate you to keep you in servitude .
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Oh my mom started being nice toe right after my brother heard from the grapevine I was bailing. Now she is nice and I wish she wasn't!!
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waytomisery Aug 9, 2024
Ohhhh no !! The guilt, obligation bomb . The vacuum to suck you back in .
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Yeah I hear you mom2mom, For me it was the selfishness, nastiness and lack of appreciation. Not one positive acknowledgement from my mother about my help. And I did a lot. A thank you would have gone a long way with me.

But it’s nearly over for me. Just have dad now and thankfully he is a lot less demanding. Just give him a jelly donut every day and he’s happy. He is just a nice person.
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Mom2mom, I hear you there! Stay strong
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One thing…..selfishness. As you said amputation doesn’t supersede her 3rd ice cream cone of the night!

Well, after preparing my home for mother’s arrival- adding a half bath and giving her my bedroom - it is all hers while I sleep on a twin bed and bunk with my treadmill - not a word of thanks. Not a word of “it looking homey and comfortable” - I can only ASSume these things because she sleeps quite well in there!
Well my home is 8 hours north of her so now - after reading all of your advice on here I will now take it and run!
I'm taking her back to her home in 2 weeks- going to her lawyer- either spelling out a plan for her at home or AL.

I’m taking my life back. I have spent almost 2 years in this dysfunctional mentally stressed state in her home while I have other people taking care of my home.

No vacation - no appreciation- I’m mentally and physically exhausted.
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lkdrymom Aug 25, 2024
Please tell us your plan worked
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the fact that its like trying to play chess with a pigeon crapping on the board and messing up all the pieces (I forget which poster had posted that great analogy)!
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I see so much I relate to I this post. I have all the frustrations and feelings mentioned. Have been involved in other’s care since 2007. Moved in with Dad and discovered where Ile
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The stubbornness and refusal by the person needing help to acknowledge how one’s actions ( or inactions) effect others , meanwhile not respecting boundaries, and having unfair expectations .

When they don’t get POA in order and expect a relative to pick up the fallen house of cards .
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Backseat drivers who didn’t help, but now want to judge and behave rudely towards me.
As the sole POA and decision-maker for my Dad, I would appreciate family asking how I am doing, instead of asking me intrusive questions about finances or how I made decisions in the past. Nobody helped me or even offered emotional comfort when I really could have been helped out with just some kindness and encouragement.
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Anxietynacy Jul 27, 2024
I hear ya!
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Just tired. It's all getting to me.
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ImNotYourMother Aug 2, 2024
I understand 1,000 %! ☹️
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Loss of personal freedom to come and go and to go on vacation without the burden of having to be responsible
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Nepenthe Aug 27, 2024
This so much. LO wants to go on vacation, but I've had to sit him down and explain that traveling isn't a vacation for *me* - I do the all the logistics, driving, caretaking, laundry.... we'll take a small trip soon, though; something close but different so we both get a change of scenery.
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That I can't care for myself. How it always feels I put my needs second to someone that no matter how hard I try to please, will always say she's not OK.

I miss the freedom of not always being worried about everything, of not feeling sick with anxiety.
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helpagingparent Aug 1, 2024
Me, too. I am sick with anxiety or crying at night.
Sometimes, like now I feel there is no way out, no me, I don't exist except to take care of Mom..and my Dad's wants and needs. He is constantly taking his financial stress out on Me, almost blaming me...for State Farm dragging their feet for Mom's $9,000 left of her (2 yr) plan. I am fried. Caregivered out. Compassion fatigue.
Siblings don't help, honestly the boys can't or won't because "it's too hard seeing Mom like that".

They are in a long term care facility - I love my Mom more than anyone on this earth. And I get upset, angry, lose patience. It's never ending. I must start to not be there 6 times a week. And stop doing their laundry, showering Mom, cleaning and shopping! Ranting, I know. Been a rough week as I'm crying typing this. Thank you, everyone, here for being so authentic and wise and straightforward.
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Anxiety ,

That’s when you say …..

“ Good idea ! let me know what day you are coming to help with that “. 🤔😄
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Family members and friends, I've learned not to talk about my mother to others.

There suggestions are just plan horrible, and sometimes down right stupid.

Like I'll say moms grumpy, I get the suggestions, take her out for lunch.

Oh great idea for a 88 yr old with a degenerative spine. 😂
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debinurse Jul 26, 2024
People don’t understand unless they’ve walked in the shoes
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When family members cone in and have thier own different ideas on how to take care of thier LO, And the fact that thier ideas are not helpful or realistic.
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Having to bear witness to intense suffering, My mother is 98. Her mind is mostly okay but her life is horrible. Simply touching her results in screams of pain. She is almost completely blind, deaf, bed bound, inflamed joints, heart disease, cancer, and neuropathy among many other problems. She can no longer do any of the simple things that once gave her joy. It's a heavy dark cloud of sadness and distress that wears you down.
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waytomisery Jul 21, 2024
I hope Mom is on hospice to get her pain relief .
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Not having the freedom I once had. And I'm exhausted all the time.
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I took care of my 90+ year old mother in my home for 4 years. She passed away 11 months ago. Almost immediately after she died, I took care of my bed bound husband who had alzheimers and Parkinson's disease. He passed away 5 months after my mother. Then, my niece (who was being cared for by her sister) passed away 5 months after my husband. It has been one month since my niece died. My sister-in-law checks on me every day and gets me out of the house at least once a week. It is hard. I finally quit asking God why and instead I now thank Him for knowing I would be strong enough to care for everyone and then be able to get on with my life. If anyone is going through such a hard time, keep going. You will make it through.
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I took care of my 90+ year old mother in my home for 4 years. She passed away 11 months ago. Almost immediately after she died, I took care of my bed bound husband who had alzhiemer's and Parkinson's disease. He passed away 5 months after my mother. Then, my niece (who was being cared for by her sister) passed away 5 months after my husband. It has been one month since my niece died. My sister-in-law checks on me every day and gets me out of the house at least once a week. It is hard. I finally quit asking God why and instead I now thank Him for knowing I would be strong enough to care for everyone and then be able to get on with my life. If anyone is going through such a hard time, keep going. You will make it through.
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Lorigon27 Aug 13, 2024
So sorry for all of your losses. I hope you will find some support in your grief, either a therapist or support group. You need time to heal. Now is the time for self-care, to be good to yourself. I wish you well.
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