Caregiving and family

[Buster's Uncle]

I mentioned being a caregiver to another member the other day - and it turns out he's involved with looking after his grandma.

I already posted what I said to E_T on hearing of his sister's terminal brain cancer, but even though it was about bereavement, that post is full of talk about caregiving and what it means and why it's important - even though there's nothing in there about my maternal grandparents except Gramma dying, and they are a big part of my personal caregiver narrative.

E_T, I'm thinking about my dad, who got two months notice of his terminal cancer. We thought we had longer, (to my brother's infinite regret, since he didn't make time soon enough) and there was a similarly suspicious circumstance that they should have caught it sooner. My father is dead, and I think they killed him with neglect/negligence - that's hard to live with, but you do because you have to.

 Hospice is a laudable organization - they were a great help.

 Love her while you have her, sir. My eyes are tearing up. Life is transitory - and painful - and wonderful and precious. It behooves us all to reach out and take the hands of our loved ones and LOVE them. Love them while we can, because it's all temporary. -I need to go down the hall and see some loved ones for a minute...

 Okay, back now. It was appreciated.

 I'm thinking about MY sister, who sustained brain injury when she was hit by a truck on her bicycle a few years ago - her life is in no danger and the damage is (relatively) minor; she's still able to work, though a shadow of the professor she used to be - but her emotions are all different and volatile, and some mental abilities that used to be easy are hard now, and she needs someone there for her, mostly just for reassurance. She's smart for a living, and something happening to her brain is an assault on her very identity. Fortunately, she has a brother with no life. I'm glad to feel needed, and my only downside is not being able to care for my 73 year-old mother in a different state. She's managing, but it makes me crazy that I can't be in both places at once.

 Zik is right about the cheering up. I say the most terrible things to my sister about her affliction; I call her seizures "faking". I give her pep-talks when she's dreading an onerous task that begin "Kelly, it's gonna suck". ("But you can tough it out, and then it'll be over.") The right take depends highly on the senses of humor involved, and my sister expects social retardation from me. I also take her ice water and analgesics a lot, and rub her feet, or her head, when she wants. I provide a sounding board for what's eating at her, and a warm shoulder. We talk about Star Trek constantly and watch old Flash Gordon and new Dr. Who together. We collaborate on artistic projects. That little shouldn't be worth the expense of feeding a giant hippy, but she thinks it is. [shrugs]

 Love her while you have her, is all.

 Daddy was going senile for years before he died. He was possibly the smartest man in the world, and his going stupid was one of the saddest things I've ever seen in my entire sad life. But there was some real compensation, as I was deeply involved in his care during those years, and they were the best years ever in my relationship with a very complex and difficult impossible man. He had good days and bad days, mentally. I spent a lot of time telling him who Momma was, providing dates of marriage, when the house was built, when my siblings and I were born - he liked hard data, and the fact that he still knew some of that stuff lent my account, which turned into a regular half-memorized spiel I told him several times a week as needed, credibility. For a while, he would feel oriented; he suffered from physical pain in his joints, but was not all that unhappy in his last years, because we made him feel safe and taken care of.

I wouldn't take a lifetime pass to Angelina Jolie in trade for that time with my father. That's a joke, but the kind of joke that's also 100% true.

 We planted Daddy two months -so yes, his bad news came at an especially tough time- after my last grandparent, which was two months after Uncle Chick. We went from too many lames to care for in too many houses, to zero lames in four months. On the way out, I shook the funeral director's hand and told him I hoped we didn't meet again for a long time. These things hurt, my God in Heaven do they hurt for a long time, but you do get better, because you have to. There is still joy to be had in our brief moment in the sun. I loved them while I had them, you see, and knowing that comforts me.

I bet a bunch of you have stories about taking care of loved ones and/or being taken care of.  Care to share?

[JarlWolf]

Too many to count, but too little I want to share unfortunately... at least for now. I will tell you that my first wife succumbed to cancer, and as for the details surrounding it and other portions of my life where I've been put in a similar situation, you will understandably know I don't want to talk about it.

Sorry if I seem like a brood, just letting you know my status/standing on a subject like this...

[Green1]

I suppose I should speak up.

I was an agency Certified Nursing Assistant in the states of Mississippi and Louisiana from 2005 to 2012. Not home health or sitting, mind you, but facility staffing where I would go to various facilities across two states wherever they were short. Before agency became so slow as to not be viable and still live inside and pay rent due to the end of the medical shortage, I worked everything from Alzheimer units, suicide watches, rehabs, hospitals, and yes... the dreaded nursing home. I was also one of only a small handful of men in this field.

The nursing homes are what iIwould like to talk about. It is also the reason I REFUSE to do CNA work/caregiver work for a large for profit institution ever again,

Family taking care of family is actually a rarity nowadays. While we do have laws in the US like the FMLA,  it is almost viewed as something you just do not do. Instead, many people are thrown into nursing homes. Now, I worked at a few decent nursing homes on contract. But, the large majority were hell holes. Imagine you are going downhill. Maybe you can not remember things. maybe just getting up and going to the restroom is a broken hip waiting to happen. You have lived on your own all your life. So, they get an ambulance and take you to one of these "rehabs". Yes, they try not to call nursing homes that anymore. they call them rehabs. But, there is no rehabilitation.

You given a CNA who does not even have to have a high school diploma. She would rathered be any place but there. While you loved one is in pain or wallowing in 4 hours of urine and feces, she is on the phone with her boyfriend that just got out of jail. You ask where is the actual nurse? Well, she does nothing but pass out meds. Touching patients is actually beneath her as she went to school so she would not have to. Even if she wanted to, she has meds to get ready for 40 residents. Some of the residents literally have 10 pages of different meds and if she gets one wrong and the patient ends up messed up from it, the director will can her with no hesitation and may even call the Board if they want to be assholes.

If they find your loved one has ANY money, they try to take it all. After all that is depleted, they take all of social security and disability except for around 30 USD a month. The only exception is if you are aq veteran in a federal VA facility. At least the actual US government lets you keep all your checks. All the while, you have to share a room with one to up to 6 others. They do feed you, but in many places the food is literally cheap tasteless slop.

The "rehab" is only if you qualify for certain parts of medicaid. They will only see you for about an hour a week. Even then, there is no walking again or anything like that. They are just there to make suggestions so the resident just happens not to break a hip and have an irate family member calling state.

The absolute worst places are also places of violence. Those places do not separate the psych from regular residents, creating dangerous situtions. the very last facility I worked, one resident lit another on fire in the smoking area, killing him. Yeah. You can not make this stuff up, kids. I have also come into ants crawling in bed with residents, residents getting drunk and getting into fist fights, and sexual favors being bought between residents.

I could go on. But I think taking care of family needs to be more common . It is much more humane than packing them like sardines in these facilities that siphon money and oftentimes are inhumane. I also think maybe medicaid should give you an option to name and pay a companion so that companion does not have to sacrifice income. It would be cheaper than paying the nursing homes big bucks for questionable care. But the Nursing Home Associations have the big bucks and lobbyists.

[gwillybj]

Every man should take excellent care of his wife.

My fiance has many difficulties; dealing with depression/anxiety, schizophrenia, diabetes, and epilepsy. I have my my own psychological, mental, and physical maladies. The majority of days are pretty decent and we look and act as normal as most people, but there are other days when things are far from normal as she has hallucinations and/or seizures, and sometimes my afflictions act up. There are times we both have trouble, and I have to rely on what strength I have mentally to keep things going.

I'm not complaining whatsoever. I knew beforehand her situation, and she mine, and we gladly took on the task. We are very happy together. As soon as circumstances permit, there will be a wedding. It will be a grand occassion, as our families are excited at the prospect and will celebrate the day with no misgivings.

It's good for the soul to have someone who loves you, but uplifting to the spirit to have someone to love.

Be kind to one another and the world will be a good place to live.

[Buster's Uncle]

That's it exactly.

[Green1]

Whatever you do guys taking care of folks, promise me this.

I mentioned earlier that if you are in the VA system, they let you keep your checks. Some veterans, particularly officers may receive not only social security and disability but a pension that is up to half thier salary when they were in the military. for officers, this can run into the thousands. But sometimes, it does not have to be money but a selfish need to keep someone regardless of pain.

I have seen cruel things like tube feedings in alzhiemers patients keeping them alive 6-7 years past normal when there is little there of that person than a husk. I have seen folks that have had 5 strokes and huge rotting holes in thier backside from not moving in bed kept alive in pain for years all because a family member di not want to say good bye. By all means, do listen to the doctor if there is hope of getting better. But do not torture or unnaturally extend the life of someone in suffering just for money or selfishness.

That kind of stuff really chaps my butt in the caregiver field.

[Buster's Uncle]

I have actually promised my mother that I will take care of her if she goes stupid.  You know what I mean.  We have talked it over at length, and she will not be made to suffer, is all.

[Geo]

It's relatively easy here to 'prematurely' end your life: apply for euthanasie.
At least, it's pretty easy for people with a certain age, disabilities, or illness.

[Rusty Edge]

My Dad was one of ten kids. When he went into the hospital... well you know the nature of cancer... he was in and out and even when he was out he had to go an hour and a half each way for radiation or chemo treatments and seeing the specialists and surgeons. I had a relay of aunts come to stay with me and my brother and sister while my Mom was with my Dad. As the oldest I was along often enough, or perhaps too often , on the trips to the hospitals.

Only recently have I begun to think of a hospital as a place of healing, rather than  a place haunted with horrible memories.

Anyway... My Dad died, my Mom eventually married one of my Dad's younger brothers, had a daughter. Then over the years more of the siblings got cancer. The first aunt survived. The second didn't. The third survived. An Uncle didn't. After the first uncle began his ordeal, My stepfather/uncle got a record breaking  skull tumor, or so the surgeon said, and he was good enough at the time to be Reagan's backup brain surgeon....

Let take a break and get back to you another time. It's enough for now.

[Dio]

It's relatively easy here to 'prematurely' end your life: apply for euthanasie.
At least, it's pretty easy for people with a certain age, disabilities, or illness.

As far as I know, where I live, it is illegal for a doctor or anybody to perform assisted death with any patient that is not on life support. Even then, it can be difficult to pull the plug on a patient due to the fact that individual members of a family sometimes have different opinions on what to do if the patient does not leave any legally binding statements regarding treatment should they become permanently incapacitated.

[Buster's Uncle]

When Uncle Chick was in a coma dying in ICU, my cousin Penny, his great niece, who had the power of attorney for that was crying and crying, not wanting to unplug him.  I said "I hope someone loves me enough to pull the plug someday when I'm not there anymore and never going to get better."  She did the right thing.

Chick went deaf as a child from rubella, and never married.  He lost a half his right pointer finger long before I was born - industrial accident, IIRC.  The kids couldn't talk with him - he was of the generation of the deaf that was taught to read lips and speak aloud, but I could never understand him much.  But he would cock that half-finger at you like a snub-nosed revolver, and all the kids LOVED him.  He died two months before Gramma, his sister, next to last of his generation to go - but I saw the faces of the 30 or so people hanging around the ICU the day he went in, much of his entire family; he didn't die alone and he didn't die unloved.

I'm crying again.

[Dio]

Tengo dos hermanos y dos hermanas. ¿Cuántos hermanos o hermanas tiene usted?

[Dio]

Tengo dos hermanos y dos hermanas. ¿Cuántos hermanos o hermanas tiene usted?

¿Por qué nadie respondió a mi mensaje?

[Buster's Uncle]

Uno de cada uno.


-Porque está en español? Tenemos un foro para que los ...

[Dio]

Uno de cada uno.


-Porque está en español? Tenemos un foro para que los ...

¡Veo!