My sister and I share care of our mom. She is legally blind, and suffers from a short bowel, due to a surgery several years ago. She's always been a vital, independent person, and is absolutely mortified having to have us take care of her toileting and bathing. There are days when her bowel issues keep her tied to the toilet, either because she's going so much, or because she hasn't gone at all, and is afraid if she leaves the bathroom, she'll have an accident. We have finally found medication that has helped to create some normalcy with her bathroom issues, but it still doesn't work like a normal bowel would. She also has a prolapsed uterus causing bladder urgency and leaking, which gets her up in the night, sometimes every 2-3 hours. She will not use a pure wick (I'm not going to pee in my bed!)We have tried bringing in a "visiting angel" a couple of nights a week, to help with bathing, and helping her get up to go to the bathroom overnight, but no matter how much she enjoys them personally, she has refused to have them back (we've had 3 so far) The cost is expensive, and her cash will be running out in about 5 months. We do have a lovely "angel" helping out 2 afternoons per week for 4 hours each afternoon. Mom loves this young lady, and that seems to be working well. She's from a generation that believes "I have children to take care of me, I don't need outside help". We would love nothing more than to have her age out in her home, but burnout is looming large for both of us. My sister has an independent business that allows her to work from home most days (she lives with mom), but we don't like to be too physically far from mom, cause we don't want her to choke while eating, or fall asleep over her food. We don't let her get up and go to the bathroom without help as she is unsteady on her feet. She maneuvers well with a walker, but only in her home environment. I am retired, with a retired husband and household of my own; I live a couple of blocks away, but spend 3 days/nights with mom, to spell my sister. Combined with the fear that if we do place her in a nursing home, that she'll pine herself away; we are worried that her physical issues just won't be attended to the way they have been at home.
We have had conversations with mom about how she could make some new acquaintances (she's been widowed for many years) in a care home, but she doesn't want to live with strangers (!) How it's important for us to be able to have some of the independence to have fulfilled lives, which she raised us to have, so that we can be the best daughters for her; but the conversation ranges from "I'm sorry you have to take care of the old lady" to "that's why I have daughters to take care of me". Aside from intense therapy to get us through the guilt of doing what must be done, how have other daughters/sons handled this traumatic event?Thanks for letting me vent! Positive ideas appreciated.
Going to be blunt; how selfish. Please, boundaries.
Not a miracle fix but sometimes all we can focus on is getting something a realistic 5-10% better than it currently is.
You say in-home care is cost-prohibitive, but you don't say how you would expect to pay for nursing home care.
Either way, once mom's money runs out, she can apply for medicaid, which will pay for in-home care or nursing home care. You must weigh the decision of whether you and your sister can sustain this at home. You sound like you really would like to keep her at home, which is understandable. However, if you are feeling guilty about allowing your mother to be cared for by professionals 24 hours a day in a nursing home, that is not something to feel guilty about and should not prevent you from making the best decision for her care. Your mother is in no position to call the shots. If her needs exceed what you are able to provide at home, she needs to go to a care home which can meet her needs.
If it's possible to use her assets for a live-in caregivers, do that. Hire two. Have them split the week or do one weekdays one weekends because it's always a good idea when the caregivers have their own residences. If her cash is running out in 5 months, borrow on the equity of her home. She's 99 years old. She's not going to go another ten or twenty years.
As for the Purewick system, have a nurse or doctor explain how it works. That it's not her 'peeing' in the bed at all. Have them also explain to her that this may be what keeps her home and prevents her taking a fall because she's getting up at night.
There are options for her and your family. Stubbornness and fussiness cannot be part of the plan and the first step is making your mother understand this.
You are going to have to be honest with your mother at the point that you and sister can no longer go on. You will have to hear her grief. You will have to join her in grieving. You will have to do the best you can with visits.
You are aware of everything. You understand everything. There are choices to be made and none of the options are good. I am so very sorry. But throwing yourself and your family onto a burning funeral pyre when it is this slow-burn is requiring a kind of "Sainthood" and a kind of "martyring" in my opinion. And Sainthood, I often say here, has a very bad application form and job description. You suffer, you die, and we expect you to FIX EVERYTHING for us, for all eternity.
You are a human being with limitations. Please consider getting professional help with Sister to embrace that, if you need to. Your mother has come to ACCEPT and to EXPECT your sacrifice. That is normal. We tell people who we are. If we tell them we are Saints and we will take care of everything then they will accept that and expect us to take care of everything. That's the sad truth.
You and sister have decisions to make. Your honesty going forward with your mother may well result in her disappointment, sadness, loss, perhaps even rage. That is ALSO called "normal".
Please consider your own age at this time and your human limitations.
If you need to, read your mother some responses here, so that she grasps at least some understanding of what has happened, and what might need addressing for remedy.
Do what you need to do for her to get adequate care and for you and your sister to have adequate lives – what is left of them.
It is a super hard decision for many parents & grown children alike. One that like AlvaDeer says should come with no guilt, but does come with grief.
It’s that simple .
Mom had a very long life , but her quality of life is getting worse as she declines .
There really is no way to sugarcoat the losses due to aging .
It is sad . And we do experience grieving over watching our LO’s decline .
You should not feel guilt , you and your sister did not cause any of your mother’s issues . You did not make your mother old and you can’t fix old .
My husband is in memory care. He’s been there for more than a year. It’s not perfect - no care ever is. The aides are wonderful and take their work seriously. They are there because they want to help people. Find such a place for mom, and don’t look back.
I wish you luck in finding what all of you need.
You need to take your lives back, before you don't have them. If both of you were gone tomorrow, what would your Mom do? She'd be living in a facility. She isn't going to be thrown into a litter of strangers, she will have her own room.
If she raised you both to be so independent, why is she not giving you that independence anymore?
You and your sister and spouses have a right to enjoy what's rest of your lives. You can't be super young either if she is 99. She could outlive you both. And know this: you don't get this time back. You need to start being somewhat selfish about how you want to spend the limited years left that you still have good health.
When she is placed, you and your sister can resume being daughters. You can visit as often or as little as you'd like. It's not ideal and dealing with a facility comes with another set of issues, but it is the best solution for the whole family, not just one person. Your mother should no longer have the right to call the shots. Once you need to involve other family members in your care and day to day activities, you forfeit that right in my humble opinion.
This isn’t going to change until you change it. I’m glad you’re here.
She isn’t making good decisions. Sitting on the toilet is only making her prolapse worse. Etc.
Don't fall for her guilt trip. How many people get to live to 99, let alone at home? She is fortunate that you have gotten her this far. You are entitled to a retirement, and your family in entitled to your time. Your sister deserves to concentrate on her work in peace, to get back to having her own home, and to enjoy her retirement when she reaches that point.
Don't worry that she will pine away. After she adjusts, she should appreciate having a trained staff to take care of her needs. They will likely have some strategies that work for her various issues, that you may not even be aware of.
Since her money is running low, you'll now be able to sell her house to pay for her care for longer than the five months she has left.
No guilt! Just do it! It's best for her as well as being best for you and your sister. Let us know how it goes.
Stick to your guns. No guilt. It's long overdue.
Good luck to you.