I posted this in the "whine" thread earlier....but I think it might be deserving of it's own thread, for those who want to complain or contemplate the issue, and also to share tips on how they got their parents to accept outside help. This seems to come up a LOT, all over the forum. This is what I wrote (slightly edited):
Why is it that so many aging parents don't see how exhausted and stressed out their caregiver children are? Why can't they see how much work this is? Or do they just not care?
I mean, just reading around in different threads - it's not just dysfunctional families, it's ALL kinds of families.
Like, why DO parents insist that their kids should and must be able to do the work of several paid workers? EVEN WHEN THEY HAVE THE MONEY TO PAY?
Why do they get so upset and resistant about allowing paid - or even volunteer - help come in to actually HELP their children?
Why do they insist that their kids be totally available to them, sometimes 24 hours a day, without allowing anyone from outside the family to spell them off?
What was all that "I don't want to be a burden" b.s. for, anyway?
My mom was like this even before her mind started going downhill. So it's not just dementia. It started with me driving 350 km every 2-3 weeks because she refused to hire someone to rake the lawn. (But she'd pay my gas and feed me that weekend....which all cost a lot more than hiring someone!)
I am really grateful for home support. I could NOT do this without them. But it was worse than pulling teeth to get my mom to accept even a minimal amount in the beginning. She still gripes about them coming in, even though they are 10x more patient with her than I am.
If it's payback for raising us, well.....it's not like our parents never got babysitters, or put us in daycare, or sent us to summer camp/granny's house so THEY could hold down a job and/or get a break.
You obviously are the ONLY doctor, nurse, c/g, chef, transporter, psychiatrist and therapist that's worth a damn for your dad. Everyone else can't hold a candle to your care.
Please continue your fantastic care because that's the only way your dad is ever going to do well. The rest of the medical community can drop dead. All your dad needs is you!
They ought to ban all geriatric medication, as it is a tool of the devil. It makes the elders do crazy things and become people they aren't. All the drug companies should go out of business. We don't need them.
How proud you must be to handle his every need. How gratifying your life must be. Gosh, I wish all of us had the talent you do to keep our elderly loved ones/parents, safe, clean, calm and cooperative.
I, on the other hand, am a no good daughter for putting my 95 year old mother in Memory Care where she is medicated with those "demon" drugs to cooperate.
I should be beaten for not allowing her in my home anymore after she hit me, threw things at me, spit at me, spit her meds out all over the table, didn't sleep all night (neither did we), urinated and deficated on her bedroom floor (my home), yelled at the top of her lungs every night at 2 am (we were near eviction from the landlord). I need to use your tried and true techniques for keeping an end stage Alzheimer's parent relaxed. Oh, I'd need to know how to do this from work, as I have to work 3 days a week. She would not let her son in law (my husband) near her.
You've got it down, Soccer. My hat is off to you. ;)
but re your moms kidnapping stuff, I'd put that more in the category of delusions rather than the hallucinations I'm talking about; from what understand, friend's mil thought she had actual physical things going on with her that bothered her so bad she was actually basically self-harming; that's the type thing I'm talking about and when I say don't want to worry you, that's what I'm talking about
the other thing nothing was ever said about any of this, so nothing was ever said about his diet; I was just glad he was being fed good but now I'm wondering if possibly he was being fed wrong contributing to everything, especially since he already had the blood disorder, but we'd better not go there now, especially since with everything that's happened since that I don't think I've gone into here, but if grandson ever got the least idea that gf had anything to do with him going sooner than could enough I fear would not be good thing. Again, there was just so much miscommunication
So my mom refused to get a wheelchair for a long time. Let me push her around in her walker for months - awkward! And painful. Finally the occupational therapist came in and said the home support workers should have a wheelchair on site. So we got one on loan from Red Cross. Told mom it was because of the workers' health and safety rules (which is true), but I've started using it for mom too - wayyyyyy nicer on my back!
Except now there are TWO giant wheelie devices taking up space in this little apartment, instead of one! One of them needs to leave the apartment.
Meanwhile, BFF has been complaining for months that her mom has been refusing to get a walker, even though she won't walk anywhere - even to the bus stop - in case she needs to sit down because her back hurts. This has really complicated BFF's life, plus her mom isn't getting any exercise anymore.
The walker has a seat and is sturdy, lightweight, and foldable. We haven't had it quite a year. I said, "Why don't we tell our moms that we'd like to make a 'loaner' arrangement? Your mom can help ME out by trying it out for awhile before she decides to buy one, which gets the durned thing out of here. But my mom won't think she's wheelchair-bound forever if the walker is on 'loan.'"
I can't believe our moms both agreed to it, within seconds of each of us asking them if they were interested. My mom just said, "When's she coming?" BFF's mom just asked if it was adjustable.
Wheeeee!!!
Lesson #1 in Getting Moms to Accept Help: tell them they're doing you a favour. Lol!
It sounds to me like your father decided not to pursue treatment, or else his kidney function was already so extremely low (and it would have had to have been pretty extreme - well past the beginning of stage 5) that treatment was not recommended. Or perhaps his other health issues would have negated his response to treatment. In any case, if dialysis was not happening, then his diet would probably not have been discussed.....without dialysis, he was dying, so it was probably assumed he should eat whatever he wanted and be happy. (Renal diet is NOT fun; quality of life does matter.) I sincerely doubt it would have made much difference if he followed a renal diet or a regular "healthy" one anyway. You may be overthinking this a bit.
(Edit: I had just PMed Shane, to see if she could give some better information, when I saw your post, Barb! So my apologies to Shane if I've brought you to this thread for no reason!)
(Edit one more time: Just checked back - in the last posts between debdaughter and I, we were discussing the stages of renal failure.)
Pharmaceutical companies are in the business of making money. Drugs that suppress symptoms and that do not cure the problem make the most money because patients have to take them forever. Competition from functional doctors who are trying to find the root causes of diseases will help push conventional doctors to try to find better solutions. Many times it's difficult to know what a drug will do. I've gotten some bad side effects from medicines, but then medicines have also saved my life. I have found that I need to do my own research and weigh the benefits with the risks.
Yes, studies are showing that many prescription drugs can reduce cognitive function. Moreover, the elderly are often prescribed multiple drugs at the same time, and drug interactions can worsen side effects.
I think you and me are on the same page. I've seen some shockingly horrible healthcare during my hospital stays 1 to 2 1/2 years ago. I found out very quickly that it's very important to have someone I trust to oversee my healthcare if I can't communicate.
The idea of caring for one's elders is cultural to some extent. Some cultures wouldn't dream of leaving their elders in the care of "strangers." In the U.S. in first half of the 20th century , many, many people grew up on farms, where children were eagerly welcomed for their potential as co-workers on the farm and "someone to care for us in our old age." There was no such thing as social security benefits until 1935, and even then as we all know SS didn't cover everything, nor does it now. People on farms got no retirement other than what they voluntarily socked away "for a rainy day." Women on farms had their work cut out for them, so they seldom sought work away from home. Many lived through the great depression of the 30's. Their mindset, therefore, is that children and/or grandchildren will care for them, even if they themselves are better off than their offspring! Despite pensions, 401K's, savings, etc., they want and expect their loved ones to quit jobs to administer their day-to-day care, taking them into their homes, or coming to live with them, etc.
The world has changed! Women are working out of the home and their income is needed for mortgages, car payments, and childrens' college tuitions. Our children take longer to leave the nest, if they leave at all! And here's Grandma and Grandma expecting to be brought into the equation, when we are already old ourselves with responsibilities galore and our own health issues.
It's very difficult for them to understand a dynamic where their own money, Medicare, or Medicaid can implement their care in senior living facilities where their kids aren't involved in all their day-to-day needs. My LO in memory care is miserable, even though she and Dad put enough away during their "working years" to pay for others (in the form of memory care) to pay for her care until death. Even in her demented state she'll acknowledge that we, her children have our own lives, our own children and health to consider; however, nothing we do is enough, even though we act as her advocate, manage her estate, take her to Dr. appointments, take her for outings, visit her at memory care to keep her company, in a nut shell "live out" our love in a multitude of ways, it's never enough. And this attitude prevailed even before the dementia! Strange, too, that mom took no part in caring for her parents, other that an occasional phone call or rare visit. She enjoyed her retirement with no responsibility to anyone other than herself.
Soccer, does the expression "heartsink patient" mean anything to you?
I'm sorry you personally had such bad experiences with doctors but your personal experiences are not universal. I'm happy the holistic treatments helped your father but demonizing other forms of treatment like pharmaceuticals (and the members here who rely on them to treat their loved ones) is very narrow-minded. What worked for your father might not work for everyone; like you say everybody is different!
I have an autoimmune digestive disease. When I was young, I got a lot of ear and sinus infections. Doctors said that antibiotics were perfectly safe, so my mom gave them to me. Later I got boils, and I was again prescribed antibiotics. I took them daily for some 15 years because my dermatologists (doctors) always told me that they were perfectly safe. They said I could take them forever. I started getting gastrointestinal issues after the fifth year of taking the antibiotics, but my doctors never took me off them. Then I got an autoimmune digestive disease (inflammatory bowel disease), and I found out that one cause of inflammatory bowel disease (IBD) is frequent antibiotic use, especially frequent antibiotic use in childhood. When I was first diagnosed with IBD, my dermatologist said that we could try a topical antibiotic instead. She kept telling me that a topical antibiotic should be safe. I replied, "No." That was the last time I saw a dermatologist. As for the IBD, my gastrointologists (GI doctors) told me that Prednisone (a steroid) did not cause osteoporosis. That was in early 2005. Now that there are other medications, I'm told that I should take the other medications (immunomodulators and biologics) because Prednisone often causes osteoporosis. But these other medications can cause life-threatening viruses and cancer. My GIs have told me that these side effects are only in rare cases. However, I did some research, and I found out that these medications are studied for only up to five years, but we are supposed to take them for life. I plan to live longer than five years, so I stopped taking them. Some of the side effects I have gotten from these medications are swollen lymph nodes and convulsions. Plus my inflammation spread to extra-intestinal areas after being on them, and I still have some low-grade inflammation in my kidneys. I also got osteopenia after having been on Prednisone.
In regard to drugs for Alzheimer's, even the Alzheimer's Association admits that medications to treat Alzheimer's do not cure Alzheimer’s or stop it from progressing:
“Although current medications cannot cure Alzheimer’s or stop it from progressing, they may help lessen symptoms, such as memory loss and confusion, for a limited time.”
https://www.alz.org/alzheimers_disease_standard_prescriptions.asp
To tell you the truth, it's all marketing. People, including doctors, are brainwashed by marketing. I'm sick of it. I know longer listen to propaganda.
What you're doing is deliberately derailing this thread. I'm talking to you, soccer100 and Subduedjoy. It's really rude and kind of narcissistic at this point.
Please stay on topic, you guys. Or start your own thread.
I'm not so sure she'd have thanked me.
To return to topic, did she expect me to do the caregiving work? She'd have said no, she didn't expect it, didn't want it. But nobody else would have been able or willing to get past her barriers - privacy, denial, self-effacement, apathy, fatalism - and get it done.
To me on the phone: "I was a little bit sick this [Friday] morning, I'm better now".
On the following Monday, Heaven bless the woman, her locum GP became concerned that mother hadn't attended an emergency appointment and on her own initiative called at mother's house on her way home after work.
Where she found that mother's description, in translation, should have been: "I am vomiting blood, and by the way perhaps I ought to have mentioned that I have been passing black stools for nearly a week."