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Yes. Here is some info I came across: CDC | Family Caregivers | Disability and Health | NCBDDD I have no use for the CDC. It is easy to say you should take care of yourself, go out with friends, stay involved in activities but who really has time for that? It confirms that people don't understand.
OP needs to take a long hard look at what sort of options are available for people that need caregiving and/or "walk a mile in my shoes".
This state is SO bad that when I told them that in one facility some really horrible things were happening (I was specific) they suggested that I made the choice to send him to that day program - the only one in our county which had been licensed by the state. It is really bad out there.
We have been through several case managers and they all agree that our son is happy at home and that it is the best place for him. I'll be 60 years old this month and I am running out of time because I can't keep up this pace but no one listens. God listens and hopefully will provide answers in His time.
Just wanted to say . . . people, even the "professionals," don't understand til they have actually been a caregiver, and on a 24/7 basis - with no hope for a real change in circumstances in the future.
And each situation is unique. There are commonalities, of course. But each situation has its own set of complications and those include financial concerns, emotional and mental health concerns, as well as the physical health and well-being of the caretaker him/herself.
I'm not going to get into a back-and-forth commentary with anyone.
I didn't BASH anyone.
And I post on these boards because I tend to my 88-year-mother who has dementia, but not on a daily basis.
I coordinate her health care, general needs, financials, etc -- AND do hands on care from time to time, to relieve some of the load on my brother who does do day-to-day care.
I brought up the general issue of possible resentment vs. venting for stress relief… and whether or not -- if there IS true resentment perhaps other arrangements might be better. I posed it because many people here have the experience to comment on it, and because when comments by others are made written and read one doesn’t know whether the person is truly resentful -or- just venting. The only way to know is to ask. That’s what I did -- and not because of any one, or two or even three posts in particular.
May I suggest that people not assume they know what a poster means, and perhaps instead ask for clarification before making accusations based on presumptions that aren't even true. I did NOT assume people were resentful, I inquired.
I clearly said that making other arrangements for an elder was NOT abandoning them. And yet a response asked about leaving a person to fend for themselves -- even though I specifically said that's NOT in any way what I was talking about.
Caregiving is a very personal, and possible touchy, or even painful subject for some. Let's not presume to know more than we do about another person's comments or intention or positions.
Thank you for giving us more insight into your own particular situation.
After reading it, I felt it begs the question . . . Are you wondering about your own sibling's possible (perhaps even unspoken) resentment towards you, as he is the full time caregiver?
I think the OP fails to realize how complicated the relationship between the care-giver and elderly person can be. Just because a person can no longer take care of themselves that doesn't mean they are grateful for help from their adult child. Some feel entitled or are frustrated over their loss of independence and will take it out on whoever happens to be around. I've worked in nursing homes and have done visiting nurse and family dynamics are very interesting to observe.
Like all anonymous forums, this forum is rife with projection and armchair psychological and medical diagnoses.
Many people do seem to come here to vent. However many people also come on here and say fairly troubling things that suggest that any caregiving relationship they might have would be severely compromised by their anger and resentment, and as they don't give you any indication that they aren't 100% serious, it is sometimes troubling to read.
I don't think it was inappropropriate of the OP to question that, just naive.
Which is one of the reasons I generally only comment if there is a specific question I might be able to assist with.
Maybe at some point it would be helpful if there were a venting sub-category? That way those seeking specific information, and those just ranting and looking for mental support could be distinct and it would be less confusing for the casual browser.
A post where the subject is saying was another person should do is presumptuous. When the poster has no way of knowing the situation in the life of another person how could they possibly think they know what should be done. They don't and if they sense it, their sensor may not be on. In my opinion, the op was bashing whether they can admit it or not.
I'm not going to get into a back-and-forth commentary with anyone.
I didn't BASH anyone.
And I post on these boards because I tend to my 88-year-mother who has dementia, but not on a daily basis.
I coordinate her health care, general needs, financials, etc -- AND do hands on care from time to time, to relieve some of the load on my brother who does do day-to-day care.
I brought up the general issue of possible resentment vs. venting for stress relief… and whether or not -- if there IS true resentment perhaps other arrangements might be better. I posed it because many people here have the experience to comment on it, and because when comments by others are made written and read one doesn’t know whether the person is truly resentful -or- just venting. The only way to know is to ask. That’s what I did -- and not because of any one, or two or even three posts in particular.
May I suggest that people not assume they know what a poster means, and perhaps instead ask for clarification before making accusations based on presumptions that aren't even true. I did NOT assume people were resentful, I inquired.
I clearly said that making other arrangements for an elder was NOT abandoning them. And yet a response asked about leaving a person to fend for themselves -- even though I specifically said that's NOT in any way what I was talking about.
Caregiving is a very personal, and possible touchy, or even painful subject for some. Let's not presume to know more than we do about another person's comments or intention or positions.
Yes you were.
Interesting that your brother is the caregiver, while it's nice that you give him so relief from "time to time"(whatever that means, like when he asks and it suits you), I guess your response to him would be if he felt overwhelmed "well you decided to do it, not me".
Typical.
BTW, how many times do people start jobs and a couple of months into realize they made a mistake or they're in over their head? So to bash people who try and do the best they can is very low.
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Originally Posted by ocnjgirl
Because it's not as simple as "making other arrangements". It took me over 3 years to get my mom to agree to leave her home and go to assisted living. 3 years in which I lived 2 hours away but had no choice but to care for her. 3 years in which when she didn't answer the phone for her daily check in call, I had to drive 4 hours round trip to make sure she didn't fall down the stairs. What are the "other arrangements" I could have made when there was no one else who would do this?
What were the other arrangements I could have made when she was in the hospital up there and needed her cell phone and her address book and all the other things people want when they're in the hospital? What were the other arrangements I could have made when she told me she was cancelling her wound center appointments because the paratransit let her sit there for 3 hours last time? How about alternative arrangements to the many hours I spent on the phone, often while at work myself, in order to try get her qualified for home health services? (which she turned out not to be quite poor enough to get from the state, but not rich enough to pay for privately) or to get her into an ALF, or the dozens of tours I had to go to in order to pick the right one? What were the alternatives I had in going through a house after 4 decades of hoarding to find the thousand things on her list she needed in her new ALF? Then cleaning it out, listing it, selling it, etc?
What are the alternatives now, when she calls me after she gets out of the hospital and tells me she left her cell phone charger plugged into the wall in her hospital room (again 70 miles from me) or when she calls and tells me she's going to be out of Depends by Thursday?
The choice actually is do it or abandon her, and I do find it annoying that you tried to make it so simplistic, as it there are all these many alternatives out there if we simply chose to use them. It's insulting to imply I'm doing this all by choice and that I don't actually have to do anything if I didn't want to, and even more so to suggest I'm a poor caregiver because I don't feel privileged to do it.
^^^^ this.
Quote:
Originally Posted by Rubi3
A post where the subject is saying was another person should do is presumptuous. When the poster has no way of knowing the situation in the life of another person how could they possibly think they know what should be done. They don't and if they sense it, their sensor may not be on. In my opinion, the op was bashing whether they can admit it or not.
Of course it was, kind of pathetic on of all boards a Caregiving board to do that, nothing like giving someone a good kick when they're already down huh?
you tried to make it so simplistic, as it there are all these many alternatives out there if we simply chose to use them.
I don't believe I said or implied anything about how difficult or easy it might be.
Apparently you presume that just because I didn't say at the time -- "I know it might not be easy" that I made it sound 'simplistic.'
oldcold and wannagonorth....you're both very insightful. Reps. Your'e both so correct.
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Yes you were.
Bashing he/she means.
Quote:
Interesting that your brother is the caregiver, while it's nice that you give him so relief from "time to time"(whatever that means, like when he asks and it suits you), I guess your response to him would be if he felt overwhelmed "well you decided to do it, not me".
May I ask why you say this? I don't believe I've presumed anything about YOUR situation. Why make presumptions about mine?
Quote:
A post where the subject is saying was another person should do is presumptuous.
Subtlety of language is important. ASKING about whether there is true resentment and about the possibility of other arrangements IF that's the case.....is NOT "saying what another person should do."
Again I urge that people stop presuming something that's NOT said.
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I don't think it was inappropropriate of the OP to question that, just naive.
This, I can gladly accept. Thank you Briolat.
But other comments have been, IMO, so emotionally charged that people are clearly projecting their own issues. And why, IMO, they're commenting on and presuming things that weren't even said.
Because it's not as simple as "making other arrangements". It took me over 3 years to get my mom to agree to leave her home and go to assisted living. 3 years in which I lived 2 hours away but had no choice but to care for her. 3 years in which when she didn't answer the phone for her daily check in call, I had to drive 4 hours round trip to make sure she didn't fall down the stairs. What are the "other arrangements" I could have made when there was no one else who would do this?
What were the other arrangements I could have made when she was in the hospital up there and needed her cell phone and her address book and all the other things people want when they're in the hospital? What were the other arrangements I could have made when she told me she was cancelling her wound center appointments because the paratransit let her sit there for 3 hours last time? How about alternative arrangements to the many hours I spent on the phone, often while at work myself, in order to try get her qualified for home health services? (which she turned out not to be quite poor enough to get from the state, but not rich enough to pay for privately) or to get her into an ALF, or the dozens of tours I had to go to in order to pick the right one? What were the alternatives I had in going through a house after 4 decades of hoarding to find the thousand things on her list she needed in her new ALF? Then cleaning it out, listing it, selling it, etc?
What are the alternatives now, when she calls me after she gets out of the hospital and tells me she left her cell phone charger plugged into the wall in her hospital room (again 70 miles from me) or when she calls and tells me she's going to be out of Depends by Thursday?
The choice actually is do it or abandon her, and I do find it annoying that you tried to make it so simplistic, as it there are all these many alternatives out there if we simply chose to use them. It's insulting to imply I'm doing this all by choice and that I don't actually have to do anything if I didn't want to, and even more so to suggest I'm a poor caregiver because I don't feel privileged to do it.
This.
I am in almost the exact situation. I just got back from the ER with my mother because she was/is not recovering well from her last hospital procedure, performed last Friday. That consumed the better part of my day, and the worst part is, since she's still weak and shaky, I'm still tied to the house waiting on her hand and foot now that she's home. On the bright side, my mother has finally agreed to look at assisted living. But there's no guarantee or even likelihood that we'll find something she'll deem acceptable that she/we can afford. And, even if she goes, I will be in the same situation as you. Emptying/selling her house, on call for every emergency, fetching books and special foods and whatever else she wants or needs and bringing them out to her in her new place. I have local siblings who can help, but I'll never really be off the hook. I feel for you, being the only one. I also find it galling when people blithely suggest "making other arrangements" when there simply are no other arrangements to be made. Thanks for illustrating the point so vividly.
One thing I wanted to mention was that in KS, both the Medicaid for elderly and disabled fall under the same agency. It took 5 years for us to be offered residential services for our son and since we didn't like what was available, we lost our space on the list and our only choice would be to start again at the bottom of the list. Even day services or personal care assistant have a 2 to 3 year waits at a minimum and this applies to both the elderly and disabled. You have to get crisis funding in order to jump the list and that isn't easy but a lot of people cheat so that makes the wait for honest people much longer. This is to say that even if someone qualifies for care through Medicaid, it doesn't mean that you just step right up and receive it. I was told years ago that the wait in FL for services under the Medicaid waiver was 8 years. With funding shortfalls in most if not all states, I don't see that situation getting any better.
And, I totally identify with the person that said that caretaking of parents (my case adult child) is not the same as taking care of your children. It is SO much different. I have to answer to SO many entities and the level of responsibility far surpasses that of parenting minor children.
Caretaking like everything else is not one size fits all and people do it for all sorts of reasons, some feel an obligation, some financial, some because the alternatives are too grim and probably a lot of other reasons. The last time I was asking the case manager about what we could do, she said "Look he loves you so much and doesn't want to be away from you." Emotional blackmail but it didn't work. I realize our situation isn't good for anyone but we'll limp along until we find what we are looking for or at least something closer than anything we have seen so far.
Apparently you presume that just because I didn't say at the time -- "I know it might not be easy" that I made it sound 'simplistic.'
But other comments have been, IMO, so emotionally charged that people are clearly projecting their own issues. And why, IMO, they're commenting on and presuming things that weren't even said.
"The decision to take care of the elder is a decision the caregiver makes. If you're going to resent doing it, then don't do it."
I "presumed" you made it sound simplistic because you did in fact, make it sound simplistic, see bolded above. It doesn't get much simpler than that. I thought I explained why I felt that way pretty succinctly, but apparently not.
"But is it to simplistic or not enlightened enough to say -- then make the HARD DECISION, to make other arrangements for them, and accept that decision? Just asking...."
But when I answer that yes, it is too simplistic, you tell me that I'm wrong and I'm presuming? Why did you ask then?
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God listens and hopefully will provide answers in His time.
Why did you ask then?
