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My Mom is at the point that she stands (barely), pivots and plops...Lift chair to wheelchair to bedside commode and back. She has very little feeling from her hips down...more and incontinent. She has "gone down" many times..I say that because her legs just give out...she doesn't really fall. She also can't see well. She insists that she is staying in her home until she dies. She had some ladies (friends) that she paid $10/hour to help (empty the pot, give her meals, help her dress). They have both recently had to leave. She doesn't want to pay the higher costs of agencies. So, I drive an hour each way to help and usually spend the night. My brother is in the area and stops by on his way home from work 2-3 days a week to check on her and take out the contents of her bedside commode (pot). So, I am the main caregiver. I do everything for her from bathing to bill paying and everything in between. I am not trying to be a Martyr, but I am tired. I have Emphysema and I'm on oxygen full time. (I also dropped a tank on my foot and nearly broke it last week!) Because I am on oxygen, I am no longer working. Mom likes this very much and thinks I should move in with her or at least be there more often. I have a significant other that I have been with for 12 years who kind of like for me to be around.



Mom is not easy to deal with and makes me feel so guilty. I don't want her to feel like she is a burden, but it does get hard to deal with. She has always been very critical of me, but look who is taking care of her! We also have another brother...he lives out of state. He recently came into town for a short visit, but did not even call my Mom! This is not the first time. Sometimes he comes for a week or so and stops by on the way to the airport on the way home. So we don't talk about him.



So, I guess I am here to vent a little and hoping to read about other people's experiences and maybe get some insight. I do love my Mom with all my heart.

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Your brothers don't think they have to be the "perfect" sons, so why on earth do you think you have to be the "perfect" daughter?
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Paige, you don't need to be a "perfect" daughter.

You need to arrange for your mother's care. With HER money.

You never get that time with your grandkids back.
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Thank you to everyone who took the time to respond to me. This is truly a horrible time. I am torn between living my own life and being the "perfect" daughter (which I never will be anyway). I know you all are right...even my Mom's younger sister yelled at me telling me my Mom was "using" me. Sigh...
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Why did the two lady helpers “need to leave”?
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PaigeT1966 Aug 2023
One of them moved away. Her husband retired and they bought property. The other one had health issues.
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Let me try to pivot this to a different point of view. You aren’t doing right by your mother. It might be what she wants, but she isn’t getting cared for in the way she needs. Needs vs wants.

You aren’t doing right by yourself either. You have a disease and you need to rest and care for yourself.

This situation isn’t a good one for either of you. Stop going over there and spending the night. It sounds like you might need your own caregiver.

Your brother who doesn’t help might have good boundaries and knows how to protect his peace. It’s not his fault you are so enmeshed with your mom that you can’t even see how this set up is a tragedy for all involved.

I say all of this with peace. I wanted you to see if from a different point of view.
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Southernwaver Aug 2023
So I gather since your brother stops 2 days a week in the evening and you go 2 days a week that sometimes urine and feces stay in the pot for 3 days?
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She is a burden. You just do not recognize it. Also it is your choice to let her ruin your life. Let her be until she has an accident. Once hospitalized, then you can let staff know about the unsafe discharge. You can also contact APS for a safety check to start documentation.
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PaigeT1966 Aug 2023
We use the liners. She has figured out how to take out and replace the bag. She has a covered small garbage can next to the pot and ties everything up. It's never more than one day without it being removed.
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You cannot continue this regime of care with your health issues.
Please hear me because the stress contributed to my stroke and subsequent heart surgery.

When my Mom was at the 'pivot and plop' point, her next phase was becoming bedridden. She was also completely incontinent. Your mom probably now needs 24/7 care.

We managed with caregivers in split shits 4 hours in morning and 4 in evening. Then as she became worse with her dementia we applied for Medicaid and moved her to a nursing home. Not at all what my sister and I wanted but we both, like you, have very serious health issues.

Contact her primary care physician and ask about a social worker from his office. They can help navigate what is eligible for your mom.
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"I am at Mom's 1-2 times per week and do a lot! Grocery shopping, meal planning, laundry, cleaning, hair washing, bathing, mail checking, bill paying, checkbook balancing...Before I leave, I make sure she can reach everything in the kitchen (she is in a wheelchair), the coffee maker has to be ready to go and all foods she might want within reach. I make sure her bedside commode is empty." 

" I have Emphysema and I'm on oxygen full time. (I also dropped a tank on my foot and nearly broke it last week!) Because I am on oxygen, I am no longer working."

But you are working...like a slave when you are at your mother's!

I echo Barb's question...do you want to change your caregiving situation?
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Paige,

I empathize with you in your situation. I really do. I cared for my mother too.

Of course, you love your mom but this routine isn’t sustainable for anyone.

This is only going to get harder. Try to step outside of the circle that you’re in and view it from the outside.

Forget about what your mother wants and what your siblings are doing or not doing. Look at what you need to do to solve this issue.

If you need help seeing things clearly, please speak to an objective licensed professional who will help you to discover alternative solutions for your situation.

Many posters on this forum helped me. My therapist helped me tremendously. An in person caregiver support group helped me.

You have taken the first step by reaching out. You can continue to move forward by focusing your efforts on finding the best way to fulfill these needs.

Best wishes to you and your family.
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When my Mom was at the 'pivot and plop' point, her next phase was becoming bedridden. Then incontinence, and 24 hour care was needed. She lived with me, so I provided the 24 hour care at great expense to my health. I loved her with all of my heart also, but don't think I could physically go through it again all by myself. It was very hard or me. I did the 24/7 part for around 4 years.

Unfortunately, this is called "declining." And it happens to seniors in poor health as they age & their body starts wearing out on them.

At home Physical Therapy helped my Mom for awhile, as she was first starting to decline. But, it wasn't enough.

No matter what you or your family does, unfortunately you cannot fix it.
Since she lives by herself, she will more than likely need 24 hour care soon, probably within the next year. I'm really sorry. There are no good answers or solutions for this. That is why most elderly in declining health wind up being placed. It's for their safety, because they just can't manage alone at home any more - no matter how much they want to. And one to two visits a week to help them is not enough for their needs or safety.
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anonymous1732518 Aug 2023
Sadly being "placed" can mean depending on others to do most if not all ADLs, which got many are "We'll get to you when we can" all the whole the elder is in his/ her waste.
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Paige, welcome.

You tell us what mom wants.

What do YOU want?

Your wants and even more so your needs (physical and mental health, time with your family) count just as much as mom's do.

Would you like some advice on how to change this caregiving situation so that it's more manageable?
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PaigeT1966 Aug 2023
Thank you Barb! I do want to enjoy my life. I have 5 grandchildren I would love to have more time with. I took the 2 youngest (5 & 7) to Mom's the other day. She had absolutely NO patience with them. She could not understand why they wouldn't just sit down and be quiet....we were there from Friday about 4pm until they left about 7:30 Saturday evening with their Dad.

I would love some advice and seem to be getting a lot of insight from this forum. I welcome all...but I always say I feel guilty, I feel selfish...:(
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