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I worked in one small hospital that serviced primarily Latinos who spoke no English.
They consistently denied any health problems . What you conclude is they just never went to a doctor , its obvious. Not picking on Latinos, just my experiences. At some point , you realize people exert their own will and follow an ingrained belief system .
This has caused severe depression, anxiety, insomnia, and terrible health issues for me.
I know we all read and see the comments about how bad this disease is, but it also affects the one that takes care of them even worse in my opinion. I’m working on trying to change my own thought processes to not feel guilty for not being able to help. I know she is one of those that even before this disease that no one could ever please.
I am sure she will outlive me because she is actually in better physical health than I am. What is pathetic is I let this happen. When you are programmed at birth to be a slave it’s hard to get away from that mindset. No one should ever feel guilty for wanting to have a little life for themselves.
Best wishes to you!
Is your angst over this situation less about your parents lying to their doctors and more about your parents' unwillingness - at least as far as you can see - to keep themselves as healthy and fit as possible? If so, that is an understandable and justified frustration, especially due to the fact that they live with you, and presumably the bulk of the caregiving responsibilities falls/will fall onto your shoulders.
If that's the case, there is nothing wrong with telling your parents some hard truths: "mom, dad, ever heard the expression 'use it or lose it'? Because if you lose too much, we're going to have to have a serious conversation about just how far and how much caregiving I am able and willing to do. For example, if you end up in a wheelchair, this house isn't equipped for that. I am not strong enough to help you in and out of bed/bathtub/toilet. If it gets to that point, we are going to have to consider at least an assisted living facility." or some such version of that conversation. There is nothing wrong with laying your cards on the table, rather than wishing mom and dad would get with "the program" and make themselves as fit as they can out of respect and consideration for YOU.
Chances are, your parents have never really considered the "what ifs?" scenarios, at least not since they have moved in with you. It seems to me, the longer a parent lives with an adult child, the less those thoughts seem to come under consideration in their minds - or at least, that's what I saw happen with my mom. Every once in a while, I had to remind her that if something were to happen to me, she would have to figure out what to do then. When Covid was in full swing with no vaccine yet and no real treatment options, she once said to me (after chiding me about not going to the grocery store more than once a week) "oh, well I don't care if I get Covid." And I told her "That's great mom, but *** I *** don't want to get Covid. Besides, what would YOU do if I and all my family got it? We would be in quarantine and wouldn't be allowed to go near you. What would you do then?" She really had no good answer to give, because there really was no good solution at that point. But it got her thinking that there was more to the equation to consider that just HER getting sick, she had to take into consideration MY health as well, because my being able to take care of her would be directly related to my own health.
That's also something to remind your parents of. That your ability - never mind your willingness - to caretake for them is directly affected by your well-being. And their seeming disregard for their health also directly affects YOU, because you are likely going to be the one to deal with whatever fallout occurs.
- Understand that they are re-acting out of fear of change and losing independence - and what this will (eventually) mean to them, i.e., deteriorating health, needing more care/givers, relocation-moving, At the least or most - SOME KIND OF CHANGE. Older people in decline (or not) do not want to change.
- When you understand their motivation, you can express compassion and understanding (not acceptance of their behavior (i.e., not sharing the truth with their MDs or others). You can talk to them about their fears of change - without judgment. Offer reflective listening, i.e., "I hear you saying XXX" - this gives them an opportunity to get their feelings out and share, and know it is okay to feel scared and it is okay to share with you how they feel.
- Do take time to listen to their needs, without judgment or confrontation.
- The goal is to give them space to freely talk about how they feel.
- The more you try to change them the more they will resist. It can be a tricky situation although take a step at a time.
You, too, be vulnerable / self-disclose how YOU feel. i.e., say "I feel scared at times when I ... xxx or when XXX happens . . . (When are the times when you) / Are there times when you feel scared, too?"
Medical Providers / Chart _____________________________
1) I would recommend that you put your concerns in writing to each medical provider so it is in your parents' chart 'on the first page.'
2) Ensure that paperwork in done re their medical records / chart giving you the legal right / authority to be informed, and as possible - a part of decision making of their heatlhcare (would mean a diagnosis of dementia).
Keep a journal of medical / cognitive changes. This kind of ongoing dated information is very helpful to MDs/providers. [I did / do this all the time with my clients: track changes.]
You need to be able to
1) talk to their medical providers (legally);
2) be with them during appts.
3) As you can, ask the medical providers to ONLY speak to your parents on the phone when you are also there. This needs to be in their chart, otherwise it sounds like a revolving door of mis-truths and likely / possibly mis-diagnoses, and VERY IMPORTANT: follow-up care.
In m own experience (w a client), I accompanied her into an exam and she lied about how much alcohol she was drinking daily. As this woman is an alcoholic, she certainly didn't want to share the truth. Drinking as she was could result in serious medical consequences due to falls, breaking bones, etc., and poor decision making, esp if dementia is involved.
It is not unusual that older people will lie to medical providers due to wanting to maintain the status quo of their life / lives. In some ways, we all want that - no or minimal day-to-day upsets or changes. We have enough stressors just surviving. No one wants to add 'more changes' to an already challenging or overwhelming life. Still, it is for their benefit to ensure they are getting the health/care they need which ultimately depends on how they speak to medical professionals, and to you.
None of this is easy. It is a process of learning as one goes.
Get the support YOU need to keep going. Take respites, try to eat healthier than not, get enough sleep and exercise. And, know I'll take my own advice and do my own PT exercises.
Gena / Touch Matters
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