I thought that I would share what has happened to a friend of mine. I’ve changed some of the details for privacy, but the gist of it follows.
Audrey was working full-time at a career that she loved. Her aging mother (who lived in the same city) needed more and more care. Eventually, Audrey made the life-altering decision to retire and move her mother in with her.
This arrangement went on for a while. One day, when Audrey turned her mother in bed, she did something to her back. Audrey was now in chronic pain.
Audrey’s mother passed away.
Audrey got back surgery. The back surgery went very wrong, and Audrey is now in a wheelchair. She doesn’t know if it will be permanent or not. The quality of her life has greatly deteriorated.
She regrets having moved her mother in with her and wishes that she had considered other options as this would never have happened otherwise.
Audrey realizes that she gave too much. There are limits.
1. Caregiving often ends up far more complex and laborious than how it starts out. This seems to be the overall experience.
For example: You are working a career, helping Mom or Grandma by dropping off groceries, handling insurance calls periodically, helping on the weekends, overseeing care agency aides. Then gradually care needs increase in scope and complexity. I kind of compare it to the popular frog in warm water that gets slowly boiled analogy. At first, everything is manageable and it feels okay. Then the heat gets turned up over time until you are in over your head.
Or, it's gradual then it is sudden. For example, taking on care tasks that gradually increase over time, and then one hospitalization the MD walks in at discharge and briefly tells you on the way out of the hospital "oh by the way your relative will need someone to always be with them to monitor them at home." LO has no one but you. Long-term care insurance only will cover an aide to come out 2 hours per day. Those amount of hours may or may not be in place already. In order to increase hours you have to go through an insurance approval process which can take weeks to months. LO needs someone to be with them around the clock starting the day of discharge, everyday for the foreseeable future. It gets even more complicated if you are the LO's only child / family, or if there are family that choose not to get involved.
2. Be careful about becoming a PDO caregiver for a family member through the state's long-term care insurance. While Medicaid allows up to a certain amount of hours per week paid for member care, there are often unforeseen pitfalls to this dynamic.
The first is the hours provided (in the state we are in it is up to 40 hours per week), are first subject to approval. Then, they can be reduced or ripped away at anytime at the whim of the Long Term Care insurance company that administers them. Also, they are allowed to do this with no reported change in member status, or any in-person evaluation. If/when hours get cut at whim, family PDO caregivers are often left in a position of the LO still needing all care labor hours performed, but without a paycheck or a dramatically reduced paycheck going to the PDO caregiver. Notice about reduced hours is often extremely short too.
The second pitfall is that even though Medicaid permits the hours, the Long Term Care insurance company decides how many hours to give. Insurance companies are notoriously greedy. We have been dealing with it. Think letters from the LO's medical physician telling them that is what the member needs will get the hours required? Nope. We have been sent to appeals multiple times by the LTC insurance, MD has sent repeat letters saying member needs the hours, yet the greedy LTC insurance refuses to give them. The state we are in mandated care worker pay be increased to $15 an hour. While they did so to follow the law, they ended up cutting care hours after for members across the board to get out of having to pay the $15 an hour. They pretty much have a monopoly in the state, so they are brazen about it too. One case manger of my LO told me after member hours were cut "you know they're doing it for financial reasons, right?". After she was transferred to another department the new LTC case manager affirmed that they cut member care hours across the board after the state's mandated pay increase for direct care workers to $15 an hour. She indicated members are pleading with her to get their care hours back, but the greedy insurance company won't budge. If you do choose to become a PDO caregiver, you should NOT rely on the insurance company to give a fair assessment and allocation of hours for the member's needs. Or, that reliable options exist to make them do so. If you do choose to be a PDO caregiver, know this first and choose to keep other income (ideally passive) to sustain and protect you.
I have been on this site for many years and this issue comes up almost daily. I ask myself Why does someone do this to themselves, give up their life for a spouse or parent?
Given this much thought and I still do not understand, could this be due to codependency, or fear of what others will say or possibly drummed in Christion beliefs and their interpretation of the bible?
IDK but I do know that doing this has ruined many people's lives, I had all I could do for several years with 3 in facilities, my boundary was clear, No I will not live with you under any circumstances.
One left, my mother soon to turn 100, I am old and tired myself, I have given all I have to give to her, I am so done with all this caregiving stuff.
I have learned to get more help with aids, so diaper changes done by me are minimal. Luckily I have this resource. Many don't. But I could have easily been in a situation where surgery was unavoidable. It was terrifying.
Yes, I wholly agree with Danielle123.