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.
You and your sister are too old to do these overnights. You need complete sleep. I'd get each of your doctors to tell you that you can no longer do the overnights due to your age and schedule overnight care until her monies run out and you figure things out. Doctors order that we need to get our sleep for our health.
Also, I'd recommend CNA's from the agency for the overnights. They will be better able to deal with recalcitrant people. They are skilled and have training. We found the home health aides (untrained and uncertified) were not as good with Mom. Also, don't give her the option of refusing to have aides back. You have to stand your ground and say you won't be there and Susie is coming back. You and your sister need to be a united front and stand your ground.
Also, you both deserve a 2 week vacation. Look into two weeks of respite care so that you can get a 2 week rest. Tell Mom again that it is doctor ordered. A month of respite care would be better. Send the daytime caregiver that Mom likes over to the respite care on her regular hours.
Do a loan against the house to pay for more caregivers.
You and your sister should start touring every type of facility in your area together to see what is out there.
Also, will the daytime lady work some overnights? Even if she worked 1 or 2 overnights a week that would give you and your sister a break. Ease in more caregivers for overnights.
"Mom, if you don't like Joanie for the overnights the other option is we can check you into the nursing home on Saturday. Sister and I can no longer help you overnight due to doctors orders. The doctor says we are too old to do this. The doctor said to hire overnight caregivers to assist you during the night or to move you into the nursing home on Saturday."
It sounds like your mom would be a fit for Assisted Living.
She would get help when she needs it and the rest of the time she can be more independent.
It may be a difficult transition for her if her vision is severely restricted. But most facilities have "liaison residents" that will help your mom.
I think setting up a tour might help you and your sister.
Once you have chosen a place (pick one that has a range of care from Assisted to Skilled Nursing) set up a Respite stay for mom. This gives you and your sister a break and mom is taken care for for a week or two
“ Mom we have tried our best , but we are old as well. We can no longer provide the level of care you need. We will have to come up with another solution including Medicaid and placement . “
Nursing homes exist for this reason despite your mother saying “ that is why I have daughters”.
You should not feel guilt. You did not make your mother old or in need of care .
Some things can not be fixed.
I had to resort to telling Mom “ I did not make you old Mom, I can’t fix old”.
Taking care of an elder when you are old doesn’t compare to a younger woman taking care of her children. Apples and oranges .
As far as the pure wick goes , put your foot down about it, you need your sleep. Those who need help are the ones who need to compromise.
They will be using a pure wick in a nursing home, and I’m sorry to say that if Mom chooses to pine away in the nursing home that is on her.
I know this isn’t the rainbows and unicorns positive post you are looking for . However , it’s the realistic one .
It’s also real that nearly 40% of older caregivers die before the elder they are caring for , then that elder ends up placed in a care home anyway.
If Mom truly raised you to be independent ,
1) she would recognize that she is stopping you from living your own life.
2) you would be realizing she’s being manipulative , and standing up for yourself more.
Don’t confuse the idea that your mother has always been a “ vital and independent person “ with selfish manipulation and entitlement in an effort to force you and sis to do things her way.
It's time for the three of you to figure something else out --either assisted living or a nursing home. Your mom might need to go on Medicaid. You will need to work with an eldercare lawyer on that.
I wasted six years caring for my parents who were largely unappreciative of my and my sister's hard work and sacrifice. They felt entitled and were thankless. Now when the end might finally near because my father is on hospice, my 74 yo husband has had three hospitalizations in two months because of a stroke and a recently discovered heart condition.
We've lost the time that we could have enjoyed some of our retirement. We can't get that back. I would also bet your mother did not have to care for her 99 year old mother and had her 70s to enjoy her life.
I know you love your mother, but it is time that you and your sister stand up for yourselves.
My suggestion would be for you and you sister to go to your own doctors about your burnout, and get your doctors to order at least two weeks respite for you – which is in everyone’s best interest. M goes into respite care for the two weeks. You don’t visit, if possible you go away.
That gives the break which may help M to see that a care facility (even for short term respite) isn’t so dreadful, and it may help you and S to realise that you have to change what is happening before it’s too late for YOU.
The two things are not the same. Twenty-ish taking care of babies is energy that renews with a good night’s sleep and maybe a nap. There’s expectation that as the children grow up, the burden of their care lessens. On the other hand, seventy-somethings caring for a ninety-nine-year-old have no hope of renewed energy, they just get tired and stay tired. They aren’t physically strong enough to perform all tasks that are necessary. The elder is only going to deteriorate rather than improve enough to take on more of her own care, which is depressing for all.
I believe it’s time to lay to rest many of the variations on “she took care of me when I was a baby and now I’ll take care of her until my last breath.” (Which may happen before she draws HER last breath because the caregiver is depleted and exhausted from attempting the impossible.)
I’m a veteran of caring for my own parents in their nineties when I was in my seventies and also my dear children when I was in my thirties. I can tell you that the effort required for taking care of the kids was nowhere near that of caregiving my parents. Let’s stop pretending that the effort expended for each is anywhere near the same. It benefits no one to perpetuate that old saw.
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.