notrydoyoda Posted January 2012
The Caregiver & Dysfunctional Families: How are you doing?
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Negativity from caregiver or person they are caring for or both?
Very cool about the wallet and voter registration, is the voter reg in good condition? Great piece of history right there!
Caregiver:
1) Having to give up career, freedom, the daily obligations, dealing with the loss of memory and the "merry go round" and let's not forget those wonderful siblings that make our jobs that much harder by being absent, criticizing, accusing, taking advantage of aging parent monetarily. That can certainly manifest itself in negative ways.
Person being cared for: Loss of freedom, having to depend on others for simple things they were able to do on their own, the role reversal, (neither likes this one) as far as I can tell, so they can lash out at their child for just trying to help because it was not the natural order of things. Mom actually admitted that to me when I asked her. Loss of their mental faculties and physical abilities.
The two can clash at times with their own frustrations and then no fun. Parents being rebellious because they don't like being in the position of doing what their child asks them to do, even though it is for their own safety or health. Ughhhh, I could go on.....
Negativity resulting from narcissism. That includes Denial of decline due to long term Parkinson's. Not having planned for decline with money put aside for long term care in other than a Medicaid nursing facility. Separation from spouse of 50 years who cannot care for someone alone at home due to his own aging and medical ailments (stroke survivor, COPD). Anger that money is not being spent on her health care by her sons when their parents have assets. Anger that children won't move a parent into their home to provide 24/7 care when it was not what they did for their own parents and not understanding difference. Anger that non-profit Medicaid facility doesn't provide 1 on 1 care. Anger that minimum wage employees and nursing staff "don't do enough or come on a timely basis". Meals "aren't varied enough and don't taste good" (see Medicaid above). Rooms are shared with older fixtures, shared bathrooms and not "nice enough" (Medicaid). Lack of activities (see Medicaid and low staffing levels) geared to individual likes and dislikes. Abandonment by friends and community - negativity and narcissism can spur these. Move 60 miles away and angry because "no one visits".
Remember, it is the State taxpayers who are currently funding Medicaid, along with some funds from the Federal government, and there is talk of cutting back on those Federal funds, letting the States handle the total cost of Medicaid.
That is why so many of us early baby boomers heard from our Great Depression parents to save for those "rainy days". When we become elderly, it is pouring out there.
More negativity thoughts.
Caregiver: No breaks, no end in sight, no vacations from parents refusing outside help and cost for in home assistance is a small fortune.
Strain on it puts on marriages and family watching their lives pass them by day after day. No more social life with friends as they dissapear one by one.
Health issues from all the cumulative stress and realizing by the time you are done with caregiving, your physical well being to resume your life back to what it was will be compromised.
More keeps coming up the longer I think about it.
As a caregiver that was sent to work in facilities for certain clients, I have witnessed atrocious neglect in the poshest, most exclusive facilities that cost them a fortune to be in. I saw the food, because I had to feed my client, I was not overly impressed. They kept the bare minimum census of required help to meet regulation on the floor and those gals were being run ragged. No time for any specialized attention or monitoring not to mention how terribly their salaries were for the work they did! Now this was not at all a "state funded place" it was very exclusive to the tune of about 8K a month per person for a semi private room and shared bathroom. I honestly would hate to see what a Medicaid facility would be like! I do not trust how taxpayer funded programs are handled anyway. Too much room for corruption. The more money you get taken away in taxes is no guarantee it would improve. Who is monitoring how the funds are being allocated? Is there any accountability? Hard as caregiving is, I could never dream of putting Mom in such a place because all I can think of is, "What if it was me?"
Here is an eye opening article about Medicaid and Medicare.
http://www.investors.com/politics/commentary/medicare-and-medicaid-are-both-in-a-sickly-state-at-50/
Day 12, of having my FIL back in our home on Hospice. The first 9 days we could see big improvements in him, as the Antibiotics from the hospital have now run their course, and he is now strictly on comfort care. Once home here with us, he was happy to be here, was eating and drinking better, as he was too sick in hospital to even care, and 99% of his fluids were coming into him in the former of IV fluids. He is now comfortable in his old room, with an air conditioner, as we've been in a heat wave here in the PNW.
But in the past 3 days, we are seeing a deterioration in him, on top of his old aggressive ornery self. He's coughing more, more thick phlegm, tired, pale, dark circles, decrease in his mental faculties, his urine is turning dark again. All of the symptoms my husband said he saw in the weeks leading up to his fall and hospitalization, and exactly what the Dr said would happen.
I've no doubt that there is an infection looming, maybe the Sepsis is coming back. I do know that his White count was still quite elevated at 15, at his last blood draw, on the day he left the hospital. so the infection was never completely gone upon before his release.
Yesterday was unbearably challenging, with his bad attitude, angry outbursts, all over him needing to go number 2, and the frustration of him having to do that from a laying on his side position, as hubby and I aren't strong enough to move him to the Cammode, as he has no strength, and drops like a brick. So it was a non stop event of moving him from laying reclined to his side, no results, back to laying reclined, try again, and over and over again. Added a suppository at the first attempt in the early AM, and him being frustrated that it didn't work magically on its own to produce the desired results! Ummmm No, you gotta work at it! Grrr! Finally 8 hours of this and he was able to GO, Brilliant! So it was back breaking day, and it tired him out too. I know that this isn't all his fault, he's weak and tired, but the Narc never changes his spots, even when he's sick and tired! So glad the day was over when I finally took out his teeth, and turned off his lights last night! Whew!
Today, we have the Nurse coming, and the new week begins. The hardest part is the unknown, the not knowing how fast or slow this "process" will take, as if it lasts several months, I honestly don't think it will months and months, but I do know that in my experience, the human body, tries it's damndest to hold on as long as possible.
I don't have tomorrow off time to address you all individually, but I hope you are all doing well, and those one of you not feeling so well, I hope you are feeling better! I'll do my best to keep up, and pop in as I can! Love you All!
Also if it is any comfort I would only predict FIL lasting a couple of weeks at the most.
I would expect him to become less and less responsive and finally slip into a coma maybe for a few days and then pass.
As he has respiratory problems he may get excessive secretions during the final day or so. This is a very distressing stage but there are medications that hospice can give to dry up the secretions. So be sure and ask. There really is someone available 24/7. Sometimes turning a patient over on their side may ease the rattle but it will still run out of the nose and mouth as a white frothy liquid. I did not intend this to distress you but felt that if you knew what may come it could be helpful.
Rainey, Talked to my contractor. He's going to draw up a plan for what I have in mind. Then my brother can give his opinion. I think he'll like it.
So impressed with you!!!! 😊 What a great sister you are!
Thanks to Everyone for their support well wishes, even on my private page, you guys are Awesome! 💓
Stacey, sorry for the hard time with FIL. Happy to hear you will be getting a nurse in to help out.
Hi, all. Hope everyone's doing alright as we start a new week. I made appointment to talk to my PCP about ongoing (and ongoing and ongoing) sores and blood in my nose and sinuses, plus the sore throat... is it glands, nodes, tonsils, what is making it sore? It's something I should at least have checked out, seeing as the sores and blood in my snot has been happening for years at this point. I did the sinus rinse with a tiny amount of tea tree before and... I don't think it helped. I think dryness is a factor and I think the tea tree contributed to, or didn't deter from, the dryness. Who knows! I'll get it looked at.
I'm working on receipts. I made paper copies of everything onto 11" x 14" paper, and I'm thinking I'll put a ring in it, or bind it somehow, and then turn it in like that. It will be GREAT to have this project done. Whatever happens after I submit it, I have the satisfaction of knowing that I've done what I think is right (to submit the receipts for reimbursement), given the situation. If I get some money back, I'll be ecstatic.
Job hunting kicks up this week since I haven't heard anything more from my efforts a week ago. I read that 80% of job placements happen due to networking, "someone knows someone" kind of thing. That wasn't always true for me, as the 2 most important jobs of my life so far both started through an advert by the company, something I came across when I was looking for a job, and the position was a good fit. I don't know why, exactly, this time around it very much seems like I need to know someone to get in a door somewhere, but that is how it seems. I've never put half this much effort into job seeking w/o having success. I'm not discouraged, just wondering what I could be doing better, or what I'm doing wrong. I'm tempted to hire one of those Job Coach people from online. They rework your resume as needed, coach you for interviews. Hm. Maybe that's a good thing for me right now. Something needs to give with this.
It's nice to have someone my age who's been through similar things, and has good ideas about all of it. A year ago, she started caregiving to her elderly and very sick dad, and I didn't think it was a good idea, but figured she would find that out on her own pretty quickly, and yep, she did. Because of that experience, she also understands and empathizes with how we want to do right by our parents but sometimes hands on caregiving is not advisable, to put it mildly.
I went to a session this afternoon for therapists who are taking college age patients referred by the university health service. Had to fill out a bunch of papers to turn in on what insurances I accept and what I charge.
Will be back later. Still not over this bug, but the headache is less.
Insurance co left off some items when they calculated our settlement. I resubmitted with notes and they are now claiming that we added new items. Obviously, they are not familiar with the claim. It was very clear what was missing from the originals, if they had compared them with what they sent back to us. Not rocket science at all. Aaargh!!!
Is it just me or is everything become a pain in the rear down to the simplest things? I gotta chase everyone, get them to fix, re-do, or fix myself, it's like the human race is "out to lunch" sometimes or, they just don't care enough to pay attention, especially when you have already paid for them for services. It is really frustrating having to pay people and end up doing the work for them.
Insurance companies are in business to deny every claim they receive or delay it so long you have died or left the country in disgust!
I don't know what is happening but it seems nobody has any work ethic, pride in doing a good job to make client happy, I simply don't get it. As a former kitchen and bath designer, I made sure every last detail was correct, down to the last 1/8" inch! Made sure client understood every detail prior to ordering, contractor and I were on the same page on how things were to be done, and done right! I wanted my clients to have a great experience knowing I truly cared how the project turned out and that they were happy. If anything went wrong, fix it immediately! No client ever had to chase me. Am I a dying breed?
No honestly, I do agree with you for the most part, but then again, we don't often hear people complaining on a job well done! 😉
We have been lucky with contractors, and have been lucky enough not to have had to utilize any big insurance claims, Ever! But both of those 2 industries are notorious for having slow and poor service records! We have been very lucky with our health care provides too! I think we gave been lucky period! I've never run out of gas, never in my life had a car break down on me, never had a break in, in my adult life! Now where is that block of wood, as I need to go and knock on it!
MUCH Much smoother day today!
For the support I have received, thank you all. I wish each of you the very best in the difficult job that each have in caring for loved ones.
Again, thank you.
You are one of the most valued and valuable posters we have here, imho.
What happened?
Absolutely! Even down to my doc filling out a prescrip form, they do it wrong, gotta go back, have them fix it and go back to pharmacy. Time wasters! I am super nice to people as well, then they treat me like my requests don't matter, ignore me unless I end up sicking my husband on them because even if I get irritated, it doesn't seem to make a difference! Sometimes I think it is still a chauvinistic world to a degree. Suddenly, they snap to attention when my husband gets involved.
Stacey,
You are blessed, I must be cursed. 😣 People here always charm you, promise you this and that and then you have to monitor everything they do because the guys actually doing the work, are not pro's but the owners never tell you that. Then, the owners stay for a short time, delegate and leave for the rest of the day. So much for supervising the job!!! I will be glad when the painting crew is finally done, another dissapointment. No more projects on the house where we need pro's until next year hopefully.
What?!?!?!? What do you mean your expected to move on? No way, you are wonderful, do not go!
No matter what it is that you're referring to, I'll take the opportunity to tell you that I'm very grateful for your participation in this thread. The way you're able to know that you deserve better is inspirational to me. It's not always so obvious to people who've experienced a lifetime of grooming or dysfunctional family relationships that we do deserve better, or that we need to disentangle because we're being codependent. Etc. Etc. There are things that you know that, in reading your comments, I pick up on and I benefit from, I learn from.
Just so you know... if you did go anywhere, I would be worse off for your absence. I hope you stick around FOREVER. :-)
I felt a bit like "Why am I still hanging around DYS thread on AC?" recently. After all, my caregiving is done. Now I'm in wrap up mode, no caregiving. I need healing, though, and some growth beyond this stress bucket of a person I've been for years now, and this thread will help facilitate that for me.
A therapist would be good for me, but I've tried to get one in my current area and it's very difficult. I really, really appreciate this thread and its participants more than I know how to say.
Not " Move on" from here!!