Mom is resisting additional care. How do we get through to her?
My mom has end stage COPD and emphysema. She broke her hip due to a fall and I've been staying with her since she got out of the hospital/rehab to help her get back to baseline. I live in a different city but got permission from my boss to work remotely for 6 months. I'm single and an only child. We don't have a lot of family.
She's doing as well as you could hope for someone with so many problems but she needs a lot of help. I would say she needs a full time caregiver. Not just because her shortness of breath but because she's afraid of being alone due to her fall.
Plus, she has really dug her heels in about wanting to stay in her home.
She has a personal support worker help her with bathing, and a nurse who comes to take her vitals. She was just referred to palliative care, but I'm still learning what that means. I think it will give us more access to care? I'm waiting for a follow up appointment to get more info. I've found the health care system to be super siloed and opaque. I've had so many vague, circular discussions with various health care people...I'm entering mental breakdown territory.
My mom has retirement savings that would cover some extra help, an assisted living facility or even respite care to give me a break. Simple, right? Let's hire someone! But when we talk about it she shuts down, cries or says she'll think about it to placate me and then nothing happens.
I'm tired.
When I ask her what the plan is when I leave, she says my Aunt will step in. My Aunt is 80 years old, and even if she could handle it...she has explicitly told me she doesn't want to be my Mom's caregiver.
I'm so frustrated. Does anyone have any advice on how to get through to her?
Being her caregiver while working full time is killing me. I'm so unhappy, and she doesn't really seem to connect with that. I also have a LOT of anxiety about leaving when the time comes because I know she's really vulnerable.
I know she wants me to stay forever but that's not going to happen. Personally I think she'd really enjoy a retirement home because she's very social and COPD + the pandemic really shut her in. But ultimately I just want her to be safe and happy...and to take ownership of this and make a decision.
Any advice, commiseration...whatever. I'm down to hear it : )
How much of this six months working remote from your mom’s house do you have left? If she moves into AL, how much work to move her, sell the remainder of her stuff, sell her house?
I can easily imagine this situation happening to my mom and me (though my mom does not have COPD and there is no aunt and she lives a five minute drive down the road from me). Good luck and best wishes to you!
Then consider both you and your Aunt together sit down with your Mom and tell her she now needs more care than even you 2 together are willing to give. You don't say you "can't" do it, you say you no longer "will" do it, this way she can't negotiate a way to make it "work" for you.
Then you move on to the solutions/options that you've already researched for her. Maybe 2, and let her pick. Give her a deadline and stick to it. Inform her what will happen if she decides to not decide: you and Auntie will report her to APS and then they will call all the shots.
This may seem harsh, but it doesn't seem like she's operating in reality -- and this could be a symptom of oxygen deprivation from her COPD. Or, just fear.
Then after this conversation you and Auntie step back and do not go there to help her. This is the difficult part. Put the more and longer you insert yourself the more she will not make a decision, or will prevent APS from coming in to provide a solution. It will be very hard at first. Then when an appropriate solution is arranged, it will get better.
I wish you peace in your heart as you do a difficult thing for a better pathway forward for everyone.
That said, mom really needs hospice, not palliative care. And they only come in 2x a week or 3x a week for a short period of time. The RN to check vitals and meds, and the CNA to bathe. Supplies are provided free of charge and a hospital bed, etc. When hospice is on board at HOME, they require 24/7 care to be present for the patient. Your mom won't have that. So she needs Assisted Living with hospice in attendance THERE.
That's not open for discussion. You need to get back home, sister is too old and unwilling to provide care, so mom has no other option but AL care with hospice to provide comfort care. Shortness of breath is ugly. Morphine and other drugs help dramatically improve breathing quality and fear of being alone is removed at the same time.
Stand firm. AL it is mom. With or w/o hospice for extra care. But you cannot devote your life to her 24/7 care any longer. I had my mother in Memory Care Assisted Living for the last 3 years of her life. She had more issues than Newsweek that I could not and would not be responsible for in my home. She went on hospice a few months before she died at 95 and was beautifully cared for in MC, and in AL previously. In fact, the care was so good in AL, the caregivers caught her pneumonia 2x and sent her to the ER before it progressed.
Do what needs to be done now. I love you ma but things have to change now. It's not what you want but what you NEED.
Best of luck to you.
But, I agree that it feels like time for hospice. I didn't realize they require 24/7 care to be there. That's not going to work unless, as you say, she's in AL.
You're right that shortness of breath is brutal - it's so hard to see her suffer and I can tell she's getting more and more scared.
(also, I just need to say, "She had more issues than Newsweek" is an incredible phrase!)
It's time to acknowledge that she cannot be home alone and her sister at 80 cannot be responsible for her. You and Sister must let her know that.
Time to explore ALFs with her, and make the best of this sad time as you are able. As my brother said of his ALF: "It's like when I was young in the Army, hon. I don't much like it but I make the best of it".
I fear your staying has done little other than to enable her thinking that this is doable.
The very sad truth is that if she will not agree to make this move then you WILL get the call. Then, if she is in hospital Social Workers will help you to get her placed. If not, you should not step in. You should remain at home where you live. She may need to fully grasp that she cannot manage alone now; perhaps the only way to grasp that is to BE alone.
Does this risk an injury that may mean her death? Yes. It does. But is that so much worse than than a few more years in care she may hate?
There are often no good answers at the end of life. I know you are in the midst of what feels like a stew with too many chefs and too few answers. But I believe you know the only real answer here, because home caregivers often don't show up. Is she capable of handling all that? Are you from afar?
I am so sorry.
I hope you will update us, but this is going to take some brutal honesty on your part. You cannot remain in the land where you are afraid to level with her what the truth is.
That's basically already happened. And I think that's a good point to make with my Mom. I can't keep coming back and forth with every emergency (especially when in AL she would have someone qualified to help her). I live about 3.5 hours away and have been making the trip way to often since before her fall.
But everything else you've said is striking such a chord. You're totally right that my staying has enabled her (and maybe my Aunt?) into thinking this could be my role.
I didn't get into it my OG post but my Mom and I have a much better relationship when there's a lot of space between us and being her caregiver has been a horrible dynamic, I feel like it brings out the worst in both of us. It's a theme I see in these message boards, and the people who get it get it. My mom is not taking responsibility for herself and making me take on the stress and turmoil. And it's really easy for me to fall into the role of being her parent.
I will definitely update you. I'm going to use the talk with the palliative care people as the jumping off point for this conversation. I really hope I'm strong enough to stick to my guns.