My mom recently moved into my home after my sister, brother and sister in law decided it was too much for them to handle any longer. I had planned a month of leave in December to try to take some of the daily load off my family and spend the holiday with my mother. She has quickly deteriorated and could only move from her hospital bed to the commode, with help from someone holding up the majority of her weight. She had a tracheostomy in May and is on a ventilator, requires meals and medicine through a g-tube and needs her trach suctioned about every hour or two. My mother was a great, loving mother. She’s a terrible patient to this terrible disease. She has extreme anxiety and it’s been awful. Not only the quick progression of her disease, my father passing away in august, her having to move from her home, give her dog away, it’s all just been too much. The plan was the month of December. On thanksgiving day, my brother told me he was done and decided to put her in a facility asap. I didn’t have time to fully think it through but I had the time planned and didnt want my mom spending Christmas in a facility so in the rush, I quickly decided she should come to my home (about an hour and a half away). That Saturday he told me he was admitting her to the hospital Sunday with no plans of her returning to his house and he would give them my number. I had the discharge team calling Sunday evening, I hadn’t even started my leave yet. This was overwhelming but I tried to be positive for my mom. I am a single mother to a 16 year old myself and have been helping in care for first my father and now my mother for the last 2 years. Making 3 hour drives and spending all of my time off caring for my parents. I guess I mention that because I feel guilty. I feel resentful of my mother, even though I know she can’t help any of these circumstances. Her anxiety makes her apprehensive to deal with anyone else. I extended my leave for a month but am returning to work soon and I am overwhelmed with stress of how I can make this work. I have caregivers coming but it is a very stressful environment at times and I worry. I worry about my own capability to wake up and caregiver, work a demanding job and come home and caregiver. My mother is bedridden and can’t do anything independently. My siblings haven’t helped at all since my mom came to live with me. They have visited 3 times. That frustrates me but I’m not allowing it to be my focus at this time. I have looked into facilities in the case that this doesn’t work out but they are all “facilities”. My father quickly declined in one and I hate the thought of my mom in one but I don’t know that I will be able to make this work. I don’t even know where to start the process if I have to. My job has been very supportive but I’ve been having emergencies and tragedy’s for over two years now. The fact that my mother is on a ventilator and has a feeding tube means she has to go to a medical type of facility. Any advice would be appreciated. I feel like I’m not the mother I want to be in caring for my own mother and I hate that. I know that things will only get worse in time and I’m already struggling and not sure what I can do.
People on a ventilator are intibated and on life support. The machine is breathing for them and they are kept under sedation.
If your mother is living in your house on life support, there are nurses coming regularly to administer her meds.
If she is on a ventilator she will have to go to a specialty nursing home that admits people on life support.
"Mobility is one of the best features of today’s ventilators for home use. Most attach easily to a wheelchair or may be carried in a backpack made specifically for a ventilator. Because many ventilators are small, lightweight, and include internal and external batteries, they can accompany the patient traveling by car, train, boat, or plane."
https://www.livingwithatrach.com/living-with-a-ventilator/traveling-with-a-ventilator.html#:~:text=Because%20many%20ventilators%20are%20small,train%2C%20boat%2C%20or%20plane.
I take it your mom has one of these ventilators to go along with her tracheostomy, OP?
I think you need to have Plan B in place for mom when her care becomes too all consuming for you at home. It's one thing to care for a bedridden elder, but entirely another matter to take on THIS level of medical care. Most people cannot do it, and there is no shame in that.
Once you find the appropriate facility to place mom in, you can visit her as much as you'd like and go back to being her daughter again instead of a burned out and stressed to the max caregiver.
Wishing you the best of luck with a difficult situation.
Thank you very much for the kind words and support. I’m struggling with this and feel terribly ashamed of myself. I wake up every day with a different mindset. Some days I feel like I can make it work if I stay positive and try hard enough and other days seem impossible.
I cared for my mother who had Parkinson’s disease in my home for over a decade. It’s very hard to be a caregiver. Please don’t feel guilty about letting go of this responsibility which will only become harder for you.
Even with additional help from caregivers, your situation is challenging.
Look at facilities that will be suitable for your mom and become her advocate. I am sorry for the loss of your father.
Your only recourse is to get her to the ER and ask for a social worker. Explain your situation that she needs a social admit and that you can no longer take care of her because it is just you. Expect with this disease that she is close to end of life. If she chooses, she may be ready for hospice or to continue with this medical futility. I am surprised that the facility thought that this was a safe discharge.
EXPECT:
Expect that she will be in the hospital for a while because she needs a specialized SNF. Expect that this facility can be anywhere in the state. If she is not yet on Medicaid that it may hold up placement.
Expect that while in the hospital, doctors will be able to treat for anxiety. Something that you and she needs
Now is the time to be just a daughter. You will find relief by taking back your own life and piece of mind that you can visit mom under much better circumstances.
You cannot.
Your Mom needs now to be in care.
You may need a nurse manager, a geriatric nurse manager to help you manage getting your Mom into care, or a social worker. But this cannot go on now.
Als will take your mother. She is dying. And that is the one certainty. That she decided on the trach is to me sad as this can prolong a miserable end often by even years. But that is done. She now needs to be in care with your loving visits. You didn't cause this and you cannot fix it and you owe allegiance and protection from this to you own family.
You have already seen other members of your family crumble under the burden of this are; I am amazed you chose to take it on.
Please get help. There will be tears and this is worth mourning. I watched a Prime program last night, a movie a son made of his father dying of ALS. Trach, the whole thing, and only his eyes and his voice recorded on computer left. Four care givers (medical system caregivers) and the entire family left praying for him to "go". Over the years his illness seemed to DESTROY the entire family. It is a great tragedy.
I am so sorry. I honestly cannot even begin to imagine what this must be for you all.
This is not sustainable for one person who is working a job and is a single parent to a teenager .
I’m sorry your Mom is sick and also lost her husband recently . However , you need to take care of you as you are responsible for a minor who needs you .
If you fall ill from this situation , you , your child and your mother all suffer .
Please get Mom into a facility near you and you can visit .
You may think caring for her at home is the most loving option. But it’s actually not. You, your mother, and your kid are all going to suffer. You will have nothing left for your kid, and they’ll be raising themselves. You can’t get those years back. Your mother won’t get the treatment she truly needs, because you cannot do it all yourself.
Don’t let guilt call the shots here, because you’ve nothing to be guilty about. Grief, maybe, but not guilt.
Deep down you know this is not sustainable.
I'd agree. Home with one caregiver for such severve ill health is not sustainable. But I'd take the view even wider.
What does Mom want?
When your Mother was diagnosed, did she say what she wanted to do? How she wanted to live?
Did she get to actively choose the serious & invasive interventions of trach & vent herself? Or did they become necessary so were chosen for her. Sometimes familes find themsleves pushed along the western medicine healthcare system & don't feel able/ready/willing to call stop. Of course sometimes they don't wish to stop, their aim is to preserve life at all costs until their Maker calls time.
Is your Mother able to express her wishes for her situation now?
Because if she wants to continue to live this way, a suitable location will need to be found where she can have 24/7 care.
You may have the funds & time to manage & train a team of care staff at home for a short time (while on leave).
Call it Plan A+Help. However, 2 x assist transfers, lifting hoist or high medical needs can blow out past a home setting. Need that Plan B.
Calling it her new ROOM is better than 'facility' ('facility' sounds like a factory to me). Even a small wording change can help a little.
It is a big issue for caregivers but to the seriously ill, that they are LOVED & COMFORTABLE becomes more important than whether their bed is in a private home or a Care Home. I've seen family members focus so much over the location of a hired hospital bed, more than what the seriously ill person wanted or needed. Which is sad indeed.
”She had a tracheostomy in May and is on a ventilator, requires meals and medicine through a g-tube and needs her trach suctioned about every hour or two.” Is someone there to do the suctioning at night or are you doing it? I used to alternate nights with my sister repositioning my father and also coming in as needed to help with coughing (my dad was paralyzed). The broken, disturbed sleep was so draining, disorienting.
“My mother was a great, loving mother.” I’m glad to hear this (my father was a wonderful parent too) but I think there are certain realities that have to be faced with this level of care. Love just isn’t enough, unfortunately.
Even in the SNF my my mom was there every day helping to care for him, suctioning him herself and calling for help when there were bowel or bladder issues etc. I can't imaging how bad it would have been without her there keeping them on top of things.
My point is, you can't do this at home, even with help coming in. I'm not a fan of nursing homes, but if you can visit mom often an let them know you are on top of things, without making enemies, she will get the best possible care. I know this isn't what you want for mom, but you cannot be a full time nurse, full time mom and employee. It's really too much. And idk how in God's name your siblings thought they could foist this on you.
I wish you well. Please come back and update us.