Caregivers and Stress

[JustLovelyJenn]

I have posted a few times about being a caregiver to my son with autism. A friend today pointed out just how much extra I do to keep my house running smooth. It made me think about my stress levels.

He is ten now.... and my son requires a few extra things at home.

We run a three part behavior program in our home that has to be monitored daily and weekly. He tracks his three chores each day which must be written on a board before he gets home from school so he can check them as soon as he walks in the door. For this he can earn up to $5 a week. He tracks his behavior at school, receiving a yes or no for morning preparations, behavior at school, and completion of homework each day. This requires an email to his teacher every day because he can not be trusted to bring a report home. If he earns 80% of these points he can have a Slurpee and a slice of pizza at 7-eleven on the way home. And we track "respect" at home. If he responds in appropriate respectful ways during his home time he receives 30 minutes a day of computer time on weekdays and 90 minutes on weekends. Disrespectful behaviors like yelling and refusals loose him 5 minutes at a time. More than 3 weekdays with lost time and he looses computer for the weekend.

These guidelines were developed with the help of every adult in his life including his therapist and have to be followed exactly. He has to get his allowance on time or he melts down. He has to get his pizza every Friday or he melts down. He can not do more than three chores or he melts down. Everything had to be carefully worded and explained. And then it took almost two months to get him to do the things we expected with regular success and minimal meltdowns.

We have to plan outings no less than two days in advance. Outings require drop bags that have meds, food, toys and electronics if they are going to be longer than one or two hours. Schedules have to be visually displayed in advance and must be followed. If a change is going to happen in the schedule or an outing is being canceled a rescheduling must immediately be presented, especially if the outing is desirable.

BUT, even with all of this, today I was reminded about the hardest part of taking care of my son. Its effect on my daughter. My son looks normal, he's smart, and he can out think you most of the time. He is physically capable of doing everything anyone else dose... but emotionally and mentally he just doesn't understand so many things. It's hard for my 12 year old daughter to understand why she is held to different expectations than her brother. Why she has more responsibility than him and why she feels like she has to "pick up the slack" so much of the time. I do the best I can to give her extra opportunity to do things she loves. Extra time with her friends, and outside of our home. But she's a caregiver too, and she doesn't even understand it yet.

That made me sad today.

[TruTexan]

This week, I have been to my mom's almost everyday so far for one reason or another. It's reminded me of just how much she needs me to remain here, no matter how bad I feel about my own life and all the loneliness I deal with being away from community of other lesbians and friends and even having a lover.
Today, I realized just how much my mom depends on me and it's been awhile for me to be able to see that because of all the tantrums shes thrown in the past. Today, I was exhausted and fell asleep for a nap and slept 4 hours. I reminded myself today that I have to take care of ME first in order to take care of mom. Today did a lot of realizing things that haven't been in the forefront of my mind.

I'm grateful for this thread. I'm grateful to know that there are others here that are also caretakers of their parents to remind me that I"m not alone in this.

So Today, I say Thank You, Thank you to all of you here that allow us to vent and converse back and forth. Thank you for understanding and having compassion.Thank you for being here for one another. Thank you my friends.

[Cailin]

today my client wanted to go get a belt for her daughter in law

dilemma 1) daughter in law is in England,

dilemma 2) client cannot walk well, has lupus

so I called in advance to ask where I should park to have the least amount of walking (she doesn't have a wheelchair, just walker). I park where they indicate me to.... only to realize we are nowhere near the Coach store. so we leave the Macy's store that we were told to park at and then drive to the other side. we finally get to the correct store-- they don't sell womens belts in the store.

(I'm laughing at this point-- sod's law)

she then wants to try saks fifth. so we drive over. this time I go in to check it out first, so she doesn't have to walk unnecessarily. Nope, they stopped selling belts


"well, this was an excersize in futility" she said

I agree-- we should have known the moment we were told to park at the wrong place.



just another day in the world of caregiving.

[Kelt]

First up I just want to say that this thread is proving to be really good tool for decision making in that if I have to write things down in a way that explains it to a general someone else, I have to get it pretty clear in my own head first to do that. So, thanks folks.

I also have my best Bud of 38 years in my corner; he has been going through a lot of this with his mother for the last decade, she is 92 and his experiences are helping me see a bit further down the road than I otherwise could.

*****************

A new day, a new set of decisions. This is an update to this post.

Yesterday was a busy one. I spoke to the hospice intake nurse I had been setting an appointment with for when I would be there, and she drove over to the nursing facility to do and evaluation with my folks now rather than later. She had access to all of the medical records, spoke with the Dr on site and my father's previous GP. She spoke individually and together with both of my parents and then called me. After a lengthy discussion with the nurse, and then a long call with my mother in the evening, I have decided what's next.

I'm going to have my father re-catagorized from a rehab patient to a hospice "Comfort Care Only" patient. I will have Medicare stop paying for room and board, my mother will start being responsible for that portion of it. (Read: I will sort out her income and set up a financial plan on my next trip and hand her the checkbook and tell her what to write and to whom. No responsibility there. ) Hospice will begin billing Medicare for their services and we (mother) will pick up any financial overruns with me in the audit seat.

He qualifies for hospice with his stroke related issues so I don't have to run around getting the cancer angle worked out which is a big relief to me. He will be offered pretty much whatever he wants without any pressure to do anything that would make him uncomfortable or cause duress. With his physicians directive and DNR in place, we will let nature take it's course without alteration. He has made it clear to everyone involved that this is his choice and preference. I will call the director of the facility today to see if this can be done without the conference call.

I will make this as seamless as possible for my mother, although that may be tricky. She is completely overwhelmed by paperwork and jargon, she doesn't understand it. When we signed him in, I was her effective proxy. It was as my Buddy described; the facility was so relieved to see an adult child arrive that they worked almost exclusively with me. They had one simple form for my mother to sign reassigning her signature to me as a "family Representative" and another for me stating my roll as representative and releasing me from any financial culpability as her proxy. It worked well because I was there in person. I hope to delay paperwork until I get there but have prepped my mother that she may have to sign some things she doesn't understand (something she has never done) and I will have to guide her on the phone as it happens.

It feels right and I am glad to have something going into place that makes sense for the situation. I speak only from my family's position as atheists and right to die proponents. This set of decisions is obviously not mainstream, but it works for us.

Thanks for listening, I'll be back with and update to my whole 'decisions about mother' later.

*****************

I found what I think is a good resource, especially for my mother, but also myself, in learning what to expect, and what some good questions to ask are regardless of a persons beliefs around death. An NIH booklet titled "End of Life: Helping with Comfort and Care" I would recommend it to anyone dealing with a situation that may end in death as general good information.

[MsTinkerbelly]

Originally Posted by Kelt

First up I just want to say that this thread is proving to be really good tool for decision making in that if I have to write things down in a way that explains it to a general someone else, I have to get it pretty clear in my own head first to do that. So, thanks folks.

I also have my best Bud of 38 years in my corner; he has been going through a lot of this with his mother for the last decade, she is 92 and his experiences are helping me see a bit further down the road than I otherwise could.

*****************

A new day, a new set of decisions. This is an update to this post.

Yesterday was a busy one. I spoke to the hospice intake nurse I had been setting an appointment with for when I would be there, and she drove over to the nursing facility to do and evaluation with my folks now rather than later. She had access to all of the medical records, spoke with the Dr on site and my father's previous GP. She spoke individually and together with both of my parents and then called me. After a lengthy discussion with the nurse, and then a long call with my mother in the evening, I have decided what's next.

I'm going to have my father re-catagorized from a rehab patient to a hospice "Comfort Care Only" patient. I will have Medicare stop paying for room and board, my mother will start being responsible for that portion of it. (Read: I will sort out her income and set up a financial plan on my next trip and hand her the checkbook and tell her what to write and to whom. No responsibility
there. ) Hospice will begin billing Medicare for their services and we (mother) will pick up any financial overruns with me in the audit seat.

He qualifies for hospice with his stroke related issues so I don't have to run around getting the cancer angle worked out which is a big relief to me. He will be offered pretty much whatever he wants without any pressure to do anything that would make him uncomfortable or cause duress. With his physicians directive and DNR in place, we will let nature take it's course without alteration. He has made it clear to everyone involved that this is his choice and preference. I will call the director of the facility today to see if this can be done without the conference call.

I will make this as seamless as possible for my mother, although that may be
tricky. She is completely overwhelmed by paperwork and jargon, she doesn't understand it. When we signed him in, I was her effective proxy. It was as my Buddy described; the facility was so relieved to see an adult child arrive that they worked almost exclusively with me. They had one simple form for my mother to sign reassigning her signature to me as a "family Representative" and another for me stating my roll as representative and releasing me from any financial culpability as her proxy. It worked well because I was there in person. I hope to delay paperwork until I get there but have prepped my mother that she may have to sign some things she doesn't understand (something she has never done) and I will have to guide her on the phone as it happens.

It feels right and I am glad to have something going into place that makes
sense for the situation. I speak only from my family's position as atheists and right to die proponents. This set of decisions is obviously not mainstream, but it works for us.

Thanks for listening, I'll be back with and update to my whole 'decisions about mother' later.

*****************

I found what I think is a good resource, especially for my mother, but also myself, in learning what to expect, and what some good questions to ask are
regardless of a persons beliefs around death. An NIH booklet titled "End of Life: Helping with Comfort and Care" I would recommend it to anyone dealing with a situation that may end in death as general good information.

Kelt, ** trigger warning** death and dying

When my Mom got to the point of pain and no hope, my sister and i were asked by the hospital hospice team to talk with her about her options. Mom was on dialysis, was about to lose both feet, and had a stomach infection eating her alive. I should back up a bit and tell you that when they wanted to have a hospice meeting, neither one of us thought death and dying, we thought care plan for the future! Soooo, needless to say we were crushed!

Mom chose to stay in the hospital hospice, and to terminate dialysis; she lasted 1 week before she died. I stayed with her for the entire week...my wife brought me clothes and i used her shower. It was the most difficult thing i have ever done in my life.

As a Christian and a proponent of assisted suicide, i agree with your decision 100% (not that you need my validation), and as i read your post yesterday re your father's condition my mind went to the memory of the peace my mother's decision gave her, and hoped you would find a way for your father to retain his dignity, and you your sanity.

I wish you strength during this time Kelt.

[TruTexan]

Kelt,
My father also decided to do hospice and stop all care for his heart, have his pacemaker shut off because his kidneys were failing, he was diabetic, had had more than 2 heart attacks after having had 3 recent foot removal operations, and he just couldn't do it anymore. He was ready to die, had made peace with it, decided on his own that he wanted to do hospice in a nursing home setting in his own room. I stayed with my father overnights, switching out evenings with my half sister his other daughter and my half brother his son, in evenings after his work. My father made peace with everyone he felt he needed to including my mother and I. I was with my father overnight the evening he passed away, my brother had just left to go home when I had to call him on his cell to have him come back. My father passed a week after being put into hospice, on July 20th,2014. I understand what you're about to go through and I hope your father's decision gives him peace within as it did mine, and I wish you and your mother peace during your time of need.