When a parent is ill: Trying to do the right thing for them.

[Mike 03]

(Mods, I wasn't sure if this was GD or Lounge material. I've tried to make it more general rather than specific or personal, so it might apply to others here in the same situation. It seemed too serious for the Lounge, where they don't even respond to posts like this. But please feel free to lock or move it.)

Let's say that you have an ill father and your mother is the primary caretaker, and they are about to undergo something serious, like a major operation or chemo, or whatever, and you want to be there for them, and they send the message, "No." Your father says he wants no visitors, and your mother says she wants no company during this period.

But you can't tell if they really mean what they are saying, or whether they are trying to protect you, in some strange way, from either seeing them suffering, or seeing them in a bad condition.

How can you figure out what they really want?

Do you respect what they tell you, or do you probe deeper, or--even more bold--insist that you go down and be with them (either with a father in the hospital, or a mother in her apartment where she will be alone while her spouse undergoes operation and recovery at the hospital.)

Confused but appreciative for any advice.

[EFerrari]

1. I'd respect their wish and check in regularly.

They might change their mind. :hug:

[DUFan]

4. I agree with this.

My mother died of cancer last August and there were times when she was in the hospital that she would unplug her phone so she could rest. Take them at their word but let them know you are there if they need anything.

[EFerrari]

5. Welcome to DU, DUFan.

:hi:

[DUFan]

7. Thank you.

[Mike 03]

12. Yes, this is good advice.

thank you.

[EFerrari]

21. Best wishes to you, Mike. I'll be there very soon with my hyper independent mom.

Keep us posted.

[KoKo]

28. Having been through this same heart wrenching experiece...I say...Listen

and RESPECT... But...OMG...My heart goes out to you because it's the hardest thing to deal with and you never know when you are stepping over the line...or if you should "take matters into your own hand."

It's hell...and tears one apart. But, remember...it's always "their own wishes" ...as you and I would want our "last life's decisions to be our own."

It's about "control of their OWN LIVES to them...and somehow we have to "walk a line" to respect their opinions. It's THEIR LIFE...and they never want us kids to forget it.

Best to you...it's hell to go through this......

:hug:

[goclark]

2. Has the relationship with both parents been good until this

situation?

I think either way, I would go to the hospital and at least make an appearance.

Who has advanced directive powers?

My Mom is 90 years old and she always feels sad that she is a "burden" to me.

Even though she saus that, I can't imagine not being there with her if I though for one moment that she may need me.

:shrug:

[Mike 03]

11. Yes, we've always been very, very close.

I have the same feeling as you said, that they are trying to protect their children.

[goclark]

17. Then I think that I would be quietly there

The way that I believe I would look at it is....

Would I ever be able to forgive myself if I was not there for them when they needed me.

I will be holding you in my heart and hope that you will just feel what to do -- follow your heart.

[Mike 03]

18. No, I could never ever forgive myself if I were not there. Exactly.

I couldn't... No way.

Thank you. That clarifies it.

[CountAllVotes]

3. do as they say

it is after all one their of their last wishes.

I had to go through this with my parents and brother and oh did it ever suck!!!!! YOU need a HUGE :hug:

God bless you!!!!

[Mike 03]

19. I'm crying now, because this conflicting advice is all good, but it's killing me NT

[DianeK]

6. speaking as one who has recently experienced all of these

terrible experiences I can tell you this. You will never regret taking the time to be with them in whatever capacity that you can. A lot depends of course on the whole family dynamic but my parents moved into an in-law apartment that my husband and I created for them within our home in 2002 and I will never regret that decision. My dad died peacefully here at home in 2004 and my mom also died here at the house in 2006. I was not so quite prepared for my husband's death a year later.

There are intangible gifts that come to you that you would never otherwise have.

[TahitiNut]

8. This response is usually motivated by seeing such a visit as a demand on their hospitality.

People who make preparations and "haul out the good china" for visits from family and friends often regard such visits as a tax on their time and resources. Indeed, they often 'train' their friends and family that it's "no big deal" and the people so hosted often remain clueless about the stresses their visits cause. In such relationships, "support" often results in behaviors that are anything but supportive, inflicting stresses they've been accustomed to ignoring.

I know that when I've been in the hospital, or home sick, the LAST thing I want to do is play happy host to the clueless.

[Mojorabbit]

13. This is true

and I got around it by saying I made you a casserole and am stopping by to drop it off. It gave me a way to help and a way to check up on them both. Turns out they did need help.

[Mike 03]

20. Harsh, but maybe truthful

(Edited)

I hope you are right.

I guess I'm a heartless piece of shit for even asking this question.

[uppityperson]

23. I see that post as advice, not as being harsh. Try this mike...

When I was in the hospital, people wanted to come visit me but I felt bad for falling asleep since they came to see me.

I think what tahiti means is make sure they know you are not coming by to be entertained, that they are in no way to cater to you. Sometimes dropping but "just to drop off at treat" is a good strategy.

Rather like when you are getting to know someone and "accidentally" leave something at their house so you can visit again to pick it up.

Figure out something to drop off, or another reason to stop by, whether that reason be real or not. It will give you an excuse to go there, and them an excuse to have you just "drop this off".

Does that make sense?

[Mike 03]

26. I appreciate what you are saying.

I'm just going to send my parents off with a care package and respect their wishes.

I would never, ever want to violate their wishes, ever.

Well, the advice here has been helpful, to say the least.

Maybe I have misread my parents. I thought they were trying to "protect" us, but the advice here has been very helpful. I will leave them alone and advice my sisters to do the same.

[TahitiNut]

32. Indeed. I tried to be brief and descriptive. The behavior can be part of a cluster of ...

... attitudes and beliefs. For example, many parents don't adapt well to the idea that their children are caring for them rather than vice versa. It's sometimes a 'pride' thing and sometimes an 'identification' (one's very identity tied to the role of parent/caregiver) thing. Many people (parents included) rely heavily on what they DO in their relationships to feel their footing in that relationship is sound. When they lose the ability to "DO" then they feel they've failed to "hold up their end."

In other cases, especially pre-boomers, it's all about "keeping up appearances." If there was a single thing I could point to as a social watershed in the 60s, it was the break with "keeping up appearances" for the under-30 folks. I couldn't begin to count the people I knew who had well-manicured lawns and bats in the belfry. From clothing to church-going to landscaping to public behavior ... people were constantly "keeping up appearances." For me, it just looked dishonest and ridiculous. For many boomers, breaking from this was what "the 60s" were most about.

My mother (for whom I'm her 'assisted living' caregiver) is a case in point. Whenever I've been ill or hospitalized, her visits were more stress than I could handle. She's a narcissist. She talks about how BAD SHE FEELS that I'm ill. So, it's like making ME responsible for how SHE feels. (This, of course, is a life-long story ... one that took me some time to figure out.) So, when I had my TIAs in late 2007 and had to stay at the hospital for observation for 30 hours, I requested she not visit -- since she has difficulty getting around, of course. (Riight.)

So, the degree to which people feel "put out" or stressed by visits are often rooted in the fabric of the relationship and how they see their role in it.



Hell... We're ALL dysfunctional. I have yet to meet a "normal" family. We're all fucked up.

[LWolf]

9. My mom had a mild heart attack in December.

She lives alone; has no spouse or family other than myself, my sons, and my grandson.

She waited two days to go to the emergency room, and didn't go until a neighbor bullied her into it. She didn't tell me anything about it at all, until the neighbor, who drove her to the emergency room, bullied her into calling me. By then it was 10 hours after she'd been admitted to a room and undergone a battery of tests.

She doesn't want to be fussed over or have her family telling her what to do, although it was ok for her neighbor, lol.

She told me not to come to the hospital. I ignored her. I spent several hours each day; took board games, cards, books, and a cell-phone charger, since her battery was dead. She spent the entire time I was there talking. I never got a word in edge-wise, just sat around, played cards, and provided the sounding board she needed.

She didn't want any of us to know about it; wouldn't have said anything at all, for fear that we might try to limit her constant over-doing. She DOES overdo. She has a lifelong habit of taking on too much, and exhausting herself trying to juggle too many conflicting commitments at once.

Still, she was glad that I showed up, because underneath, she was frightened. All that talk was releasing some of the built up stress, and my presence grounded her. As long as I didn't offer criticism or advice, or project my own worry on to her, she was glad I was there.

Of course, if the hypothetical parent has a spouse to manage the situation, it might be different.

Still, just showing up and being a "presence," without saying or doing more unless asked to do so, might be good.

[NashVegas]

10. If You Normally Have a Positive, Supportive Relationship With Them

Go.

It's normal for people to fear being seen at their weakest. But that's when they need your support the most.

[tosh]

14. I would go....

unless it involves a terribly long trip to get there, I would go. I've been through this and I was always glad that I could be there for them BUT I lived close by so it wasn't a big deal. There is always a lot of extra stuff that needs doing.

I know a bit about your father's situation but I don't know if they are getting on up in years. If they are, they need to get used to letting you help a little.

If the travel is long/complicated/expensive, though, you could just stay in close contact for those days.

[janx]

15. Do you live near them?

?

[Mike 03]

22. Yes, I live about two miles from their home here, and I am 90 miles drive

from where my father is being treated.

[janx]

31. Then try to keep in touch.

Both of my parents are dead. Keep in touch and try to respect their wishes. :hug:

[Tangerine LaBamba]

16. Respect their wishes ...........

They have stated unequivocally what they want you to do, and that is to do nothing. They want to be left alone, and you must respect that. They've given you all they can, and now your job is to give back to them what you clearly know they want: to be alone with each other.

They want to finish up the way they started out - just the two of them. That is as it should be.

I've been in both positions - having a dying parent who wanted to do it himself, with our mother, we stood back and let them do what they wanted to do. We had done and said all that needed to be said and done, and they both knew that we were there at any moment, should they want us. But, they didn't, and I am so thankful we were respectful of their wishes.

As a patient in lousy shape, I didn't want anyone around. Sometimes just having to stay awake or to listen to someone or - god forbid - make conversation was more than I could handle. Even then, people still showed up, and it was tiring and annoying.

They were doing it for themselves, not for me.

You are not the main actor here. This is not your show. It belongs to your parents, and you have no right to second-guess them. They know what they want. The last thing they apparently want or need is to have to deal with the anxieties and/or fears of anyone else - they've got their own to handle, and they obviously know what they need to do.

I say Bully For Them, and I applaud their steadfastness and self-awareness.

Now, you must step back and be respectful. It is the most loving and generous thing you can do. Sometimes, the best - the the most difficult - thing you can do is to do nothing...........

[Warpy]

24. I would tend to look at age and other factors

Old folks tend to be a little fearful of being packed off to a nursing home when they really prefer to maintain as much independence as they can. I've seen partners when one spouse is clearly suffering from late stage Alzheimer's who refused visits from children for fear they'd be separated, for instance.

It could be as simple as your mother not wanting to wash extra sheets and worry about feeding you and your dad just not feeling up to company in the hospital.

I'd check in frequently and be ready to leave quickly if things don't sound quite right, check into a motel so Mom wouldn't have to cope with a guest, be available to visit the hospital, talk to the doctors, and help set up services to allow them to stay in their home should they require them.

That's pretty much what I did with my folks, run interference with doctors and social workers and keep them in their own home. Once my folks caught on to the fact that I was trying to maintain their independence instead of my own convenience, they relaxed.

[wellstone dem]

25. The closest I can come, is the time I found out that Mom had been

checked for Breast Cancer without telling any of us kids. "I didn't want to worry you." I told her I appreciated that and that if I was ever being tested for a serious illness or having exploratiory surgery that "I won't worry you either." Her eyes opened wide as she realized she hadn't thought of it that way.

After that we made a deal that we would all tell each other and would support one another as we are able and as the person wants. So my 89 year old dad, (I love him so much) is having surgery in May, and they are already accepting meals for their freezer and they let their kids know ahead of time so that we could get work off the day of the surgery.

On the other hand, I have to tell you that I am pretty introverted and have already told the people I work with that if I'm ever sick, the biggest help is to leave me alone unless they hear otherwise. Family though, I would let torment me by their presence because it would make them feel better.

edited to add: what a jerk I am, I forgot to tell you that I am thinking about how hard this must be for you, as many have said, take care of yourself too during this time.

[Mike 03]

27. Just a quick thanks for all of the posts. I'm too shy or embarrassed to respond to

all of them, but I am reading every one of them.

Thank you from the bottom of my heart. You have taught me a lot of things I didn't know.

[salin]

29. My father wished this

on an early procedure in his cancer experience. I was more than a thousand miles away. I was miserable and horrendous to be around. I expressed that I needed to be there for *me* and to please let me be there. When it shifted from a (adult) child making sacrifices to be there for them, to the child selfishly needing to be there for the child's sake, the dynamic (and stay away until "I am well") order went away. Some parents, even in their times' of need, are so attuned to not asking or wanting sacrifices to be made by their children that the "don't come" statement is made. It is sincere. But in some cases it is not so much about not wanting their off spring around, as it is not wanting to inconvenience the offspring - especially if it would be the case that if the kids come now, they might not be able to come later for visits when the ill parent might feel better and be able to better enjoy the visit.

I was able to be there during later operations, and for every other weekend in the several month period when he was dying from cancer. I never heard again "don't come." My siblings, however, remembered the earlier message and stayed away even when asked to come. Sad for them, they never got to make peace on unresolved issues. I am so thankful for that being able to be there.

[Samantha]

30. I think you should do both -- respect their wishes for privacy

but go to the vicinity and stay close by in case they need you. In difficult times such as these, those most affected, your Mom and Dad, have the right to expect their wishes to be observed. However, should something unexpected happen, you won't forgive yourself for not being readily available to show up on a moment's notice on either one's doorstep should you be needed. Is there is a friend close by with whom you could stay?

I am just telling what I would do. I would not have the ability to keep a far distance between my parents and myself in difficult times. But I would respect their wishes to have their privacy. Some people really do not want their loved ones observing them going through traumas such as this; they prefer to "walk alone." And if that is their current thinking, they should be entitled to have this privacy.

But perhaps what I would do is not the right answer for you. Only you can decide. Good luck in your decision.

Sam