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.
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?
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...:(
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.
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.
" 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?
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.
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.
You need to arrange for your mother's care. With HER money.
You never get that time with your grandkids back.