My spouse had a near fatal stroke in November 2011. It was not until early 2012 that he was able to return to a home setting. Cognitive intact but needs help with most of the ADLs. At the time I was working 45 miles from home and wanted to hold onto that job for dear life, so that I could maximize my own retirement income. Once my spouse returned I set up with a private home health aide agency to cover him for two days a week for 12 hour shifts, because that's how long the work day and the commute were. I'd get home exhausted and then have to do the housework and dinner. Anyway, one of the home health aides that we had, who otherwise would have been a good match, approached me regarding working for us privately. He'd apparently been poking around on my desk while I was away and must have seen the difference between what he received in wages and what the agency billed. I said no. He also didn't notice when my spouse left the phone off the hook one day midday so when I called from work and got no answer I didn't know what had happened (nothing, as it turned out). I completely lost it when I got home that evening. Then, he missed three Friday shifts in a row, meaning I couldn't get to the office as required. The agency called me and said he'd quit our case and so had the agency. I replied that the final bill they'd just sent would NOT get paid until I got a reason for being cut off so abruptly. I sent that letter certified mail. I never did get an answer so I never paid the bill. Since that time, we have become more fortunate in getting care for my spouse through a PACE program and have good home health aide coverage through PACE. That's a tremendous improvement due to the oversight provided by the agencies that contract with our PACE program. That's a lucky break because I lost my job in 2015.

One reason for not reaching out for support is because it will backfire! I begged for help with a hostile mother who threatened to charge me with elder abuse if I didn’t do exactly as she said (stop cleaning the house, stop asking her to bathe, stop trying to feed her healthy food, and more!). I called my local office on aging and was told they don’t help with that sort of thing. They suggested I contact social services. Did that and specifically asked to have someone contact me. They sure did...after talking to my mom who made ridiculous claims of elder abuse! Without due process or getting my side of the story, I am now in the system as an abuser of a person at risk. No money available to clear my name. Now I may get fired from my job, won’t be able to get another job and I’m in my 60’s with low income. Why don’t caregivers seek out help? This is why!!!! NEVER VOLUNTEER TO TAKE CARE OF YOUR ELDERLY PARENT.

Care through an agency did not meet my requirements, which were consistency, dependability and initiative. We were never sure who would be dispatched by any of the multiple agencies we tried and my father was unable to explain to whoever arrived what they needed to know/do. For companion care, there wasn't enough initiative on the part of the person dispatched. They would read or play with their phone rather than find activities my father could do, even though I provided them with such activities and ideas. They could not accomodate our schedule. Their were times we were notified at the last minute that "no one is available". That's unacceptable. Siblings were unwilling to commit to regular schedules or tasks. This is their lifestyle. Once I accepted that, they were willing to participate on a more infrequent and spontaneous level, which was more enjoyable for all. I hired a wonderful caring, compassionate and reliable friend and thanked God each day for her. Together we worked out a schedule to let him live fairly independently for a long time. We both continued his companion care in assisted living, which was supposed to provide some activities but didn't. We tried to fill in the gaps. Our medical and support systems use a "team" approach that doesn't always provide the desired results because the teams are too large and fragmented. Documentation is used to provide communication and set expectations.

It's my understanding that this page is promoted by a company looking to generate housing and/or care...but that said, it was a well written article. I gave in/gave up and attempted to set up care and learned my lesson after about 12 weeks of trying. Care via an agency is about $20/hr and the companies deny having minimums yet escalate the rates for visits that are less than 4 hours. They have someone out to interview first which in my mind is scoping the situation and the sense of finances since it is often private hire; then they waste more time with another visit for someone to do a care plan. One agency even sent their marketing person out while I am losing time at work and the person could not answer basic questions. I participated in a caregiver support program through our local office on aging which reimburses for respite care. Great concept which is ruined by forcing people to use it in a 3 month span. As noted in the article we need to have reliable care we can depend on regularly and consistently, not for 3 months and leave you hanging. I could have stretched out the allowed funds.
The people we had from a "good" agency were nice, but awful in doing anything of value. No initiative and led me to think more than once they deliberately do a poor job so you will never ask again. They want to just sit on their behinds and use their phones. The goal for us was to get mom to shower and have some socialization. SHe was/is a challenge, but it was not an excuse for these aides to not try. And in observance of this not happening, I figured the least I should be getting for our $$ was some light housekeeping. Which as mentioned above was done poorly, was of no help to me, and even caused some damages because the person lacked common sense (and was a retired nurse no less!)
As for a support group, I had been going to an outstanding one...good people, and a great facilitator; it was sponsored by our local chapter of the Alz Assn. Then the Alz Assn decided to operate differently, go to a more volunteer led method as best I could tell. A staff member led it with volunteers who were going to gradually take over. Staff member lectured too often, made assumptions, agitated people who started to drop out and not return. Finally two co-leader volunteers took over...but they are not experienced in facilitating and to make sure everyone has a chance to contribute. More like a spotlight held on any "fresh blood" and the rest are ignored. I break my behind to get there and have felt unheard and consequently unsupported one too many times, and will not be going back...my time spent better just relaxing at home. On line support via this site is more supportive.
Not to mention safety/theft concerns...it's real. Luckily we have one room in our home with a lock and we put the valuables in there...but not everything.

I never refuse help, but it's very expensive. Even a sitter--who does nothing but sit and watch--runs $20 an hour. Hands-on care is about double that. I don't want mom in a facility for fear she will get cross contamination infections--it happens all the time. So the work will quadruple on my part.

mom is on hospice, but a CNA only comes twice a week and there is no telling when she will come--mom's care is so involved and frequent the offer of a bed bath and changing does no good for me since I'm changing her all day long and cleaning her; they cannot help me. It's more STRESSFUL waiting for the CNA to come over all day long than to accept this kind of "help". Only if someone stays with her for hours and hours but this is beyond the scope of hospice. As for hospice sitters, they are volunteers and God only knows what you are bringing into your house

The article talks about accepting that some people won't help, but fails to include that in reasons caregivers do not accept help. I have a sibling who says they will help, but fails to do what they promised or does it in such a way it causes me more work to fix what they have done. What's the point?

Excellent advice print and reread daily

Excellent advice

I'm in the process,I want them held accountable, but that won't give me him back

To Tsoto1: I hope you see a lawyer about what happened to your husband.

Everyone's situation is different. Some find true gems to help out, others have real problems. The main thrust of the original article was that elder spouses often feel that only they can provide the care in the right way, and some adult children do, too. I had some of that, myself. But the comments have gone in all directions and the whole thread is interesting! Thanks for reading. Carol

The one time I left my husband in a (highly recommended and accredited) rehab hospital far from my home(couldn't be there daily) in 2 weeks he was neglected in some way causing him to go without oxygen,he has not been conscious since

My fear is being robbed by the hired care giver. I have heard too many stories.

I never thought I nrefef help until I started getting it. My wife of 17 years, 2nd marriage, doesn't know me. I'm just there to care for her needs and some days 4 different people depending on who she thinks i am. : )

Actually, I was often able to find good care help when my mother was on Medicaid. It was a lot of work; constantly refusing poor aid workers and demanding better ones, changing agencies when I was displeased with their quality, etc. Here in Connecticut there are options. Besides the care agencies contracted with the Area Agency on Aging, there is a program whereby I could choose to hire (and fire) caregivers while Allied Community Resources took care of background checks and payroll. I was, of course, still constrained by Medicaid limits. But it worked out and I was lucky to have known good people by then. In fact, I was still able to use them when my mother was receiving at home Hospice. And of course she had me, pretty much round the clock.

My name is Terraine S. I care for my 67yrs old brother. Been doing this for about 22 or 23 yrs. I have no help. Our choose. We tried but it was a stressful. I am 75yrs old. I am tired.
We are taught distrust by the system and society, and penalized for activating what we are taught in our hour of trust and need.
My thoughts on these articles. While these article are good and give much good information, it may not service all caregivers. And that is for many reason. I am a caregiver, and I resent these articles-after reading them-made to feel guilty about my decisions for my situation. Stress, is one of the primary problem of caregiving. Whether it is stress brought on by ourselves, or by society, or by the system; Stress is the main factor and how, I choose to eliminate and minimize stress that is conducive to me and mine, I should not be made to feel guilty about and more stress added on by other none understanding and labeling me as controlling, or not wanting help, etc.

I found it interesting, that when these informative articles speaks in terms of caregivers and their caregiving, very seldom, do they speak or write in terms of sibling caring for siblings. They may use the words love ones, or other, but that comes with the suggestion of someone in an elderly capacity which does not exclude someone of a youthful, or years below a seniors age or just someone.

The other thing that comes to mind is, many time, especially with poor Black families, that struggle to eke out a pretty decent life and home living for their family, hoping to live their love ones with something after they are gone. And, they seek help from like an agency of PCA means, but find out that in the end, what they have worked so hard for, will not go to their family members but to an agency. And their family members are lift out in the cold. In many cases, the PCA helpers, help their self to the people's property under their nefarious knowledge of laws and you not knowing and have to rely and trust them...the wolf, in sheeps clothing. And we saddle the caregiver, with the burden of guilt, that we so adamantly try and talk them out of. What a vicious circle. AND, NO ONE WANT TO ADDRESS THAT ISSUE! As a lawyer told me when I tried to adress it, her concern was for the lawyer losing their livelihood and good name.
Thank you.
Sent from my iPad

Wow. This author was merely trying to describe many different ways a caregiver could begin to face burnout, she was only attempting to describe different types of situations that can occur. Just because it isn't YOUR experience, and doesn't happen as often as siblings who WONT help, believe me, it DOES happen and for many of you to create such a ruckus and reply to this situation so negatively really makes it difficult for those of us who have been literally SHUT OUT of the opportunity to help their parent due to an overbearing, lying, selfish and inconsiderate sibling who claims to be the caregiver. Every family isn't the same-how sad it is that you feel you have the right to not only have your situation discussed, but you won't allow a conversation for those of us who are suffering a different kind of situation with our loved ones. I feel you should stick to the issues that apply to you, so the rest of the broken hearted children of an elderly parent can try to get some intellectual guidance from the article.

I commented before on this, but probably in a longer form. If the quality of care given was dependable, then it becomes only an issue of one sib wanting to do it all, or not accepting help. Fact is, our care system is medically focused and totally fragmented, to the point that professional hands follow certain written standards, letting anything not written fall between the cracks. Meanwhile care needs evolve, change, grow - lots falls between the cracks - and in too many institutional homes, medication is used to calm a patient's anxiety - but much of that anxiety arises because patients see the gaps. When medication is used to calm them, the professional caregivers continue with their focus on what is written.

Growth, confidence, trust can occur when prompt, alert, care is given to small details as they arise, often seem large in the eyes of a disabled person. Communicating tasks and organizing them, is a great skill, hugely helpful - but heavens, some of us women were trained to fit in, not organize chores tasks. Yes, that's what's needed, and maybe the best help would be to help the caregiver make and update the lists!!

Instead everyone talks about the needs of the patient, but people see those from different angles, and we caregivers are quickly distracted by patient's needs so we get derailed often in conversations. Help with organizing - help that sets blame and hurt aside, and tries to get lists of needs updated, realizing they change over and over again with time - village life used to surround seniors and be the backdrop of supports. Now caregivers face an overwhelming number of choices from legally and medically and financially defined agencies, and a lack of realization of the significant challenges a close-at-hand carer struggles to translate repeatedly to people who criticize her for emotion or length, but she is left to figure out all the translations - or witness sub-standard, often risky care for the elder.

Hi CMagnum. It's from Sheryl Sandberg's book, on encouraging women not to drop out and run away from failure or lack of promotion in business, but to "Lean In", push harder and more effectively. That's my summary, from perusing the book, not reading it all, so take with grain of salt. But as someone who has left careers when I found misunderstanding, I find the support encouraging - and I wish that adult sibs would support each others' paths, as part of family definition of caring places, but historically, society has supported married adult couple's lives, and patronized those not so engaged, so I like the idea also of trying to think of what I could ask my other adult sibs (maybe to pay for a home organizer to help me, after so many of my years focused on my disabled brother).

Castle, good remarks. I have a question. What does this statement mean? "On another site, a woman noted how she needs a husband to "lean in" with her, if she is to "lean in" to develop her career." I've never heard the expression to "lean in."

Sorry, quick add here. I add my condolence to Angelfire, we adults seek good, respectful, helpful relationships with each other. I'm sorry for your loss - actually, I feel sorry for all losses when they happen. We realize how much we miss.

I just want to note, in my recent story of complaining to my older brother with resentment for not calling me to see how I was doing with the major snow - I was noting the unfairness, but not thinking of the fact that more than either of my two brothers, this one did manage to make time to visit me, 3 times in last 10 years. So, some of my resentment, is family stuff - I resent how in my childhood, our home was organized so that alcohol ruled, disabled were patronized but not helped to learn to contribute, and older sibs supported that order, while one older brother and I did the extra care but were left out.

On another site, a woman noted how she needs a husband to "lean in" with her, if she is to "lean in" to develop her career. And she notes how her home is different from that, she and hubby share the load, not like her grandmother who used to hand the grandfather a cocktail when he walked in the door and she had a pot roast waiting in the oven. (my home too.) Role model being that caring at home for the fragile, was not an important role with its own demands, but something that married couples can ignore. In our mobile society, we got so many different role models and ideals - not easy to come together as adults, when we were just taught to be nurtured as children (or not) and then separate as adults, not interfere with anyone's "independence".

I just read the posts by CMagnum, with the list of added reasons, often personal, of why caregivers don't accept help, and Irishboy's summary of how it gets set up, initially when one sib, often a woman, not always - but who lives locally, and starts to "help" and the other sibs are just glad that someone is doing it, not them, and leave them to it, and justify their decisions, sometimes by criticizing the actions of the caregiver, or by belittling the expressed needs.

I agree with all those sides, life is complicated. I don't believe that one party is a saint while the other is a villain, yet I do believe we all seem to slip into habits that we need to break - and that requires personal time to reflect and pray on what is best. I can spend a lot of time complaining, and I DO complain that our society does not have enough public conversation on what is really needed to care for fragile people, so some people think the issue can be delegated and blame caregivers for not delegating enough. And, I find that communication is needed and delegation and asking for help are very complicated, and it's hard not to bring years of resentment into the process of even asking for help - even if the resentment is valid, others often are answering to demons or expectations of their own (like trying to placate spouses, instead of help spouses and siblings work together in any functional way.).

I just complained in resentment that my older brother came back from Barbados, grumping that he did not give ME a call, when the whole world knows New England was hammered by 9ft of snow in a month, and I struggle alone to work and maintain a house for tenants (after 40 years of care for disabled brother who is now in Nursing Home). But our family rushed to patronize the 2 disabled children, and give them brief care, never ongoing. So older brother does call our cognitively disabled brother weekly - but I'm the one who gave of my time to teach that disabled brother to gradually handle more responsibility - but the disconnect is that I understand gradual care, and how being close enough to know what's needed, is different from adding one time interventions. And, at this stage of my life, I'm working in Underearners Anonymous, to focus on my habits, of working to exhaustion rather than allow myself time to rest and write, and plan to meet my financial needs, and use my skills to teach other caregivers - including accepting the option of failing the fragile person - only choosing to do what one can.

I see my own need to work steadily (forgiving ups and downs) to slowly build my stability and desired life. When I do that, I find myself more able to consider what specific help or idea I might ask from my other siblings. They are more likely to respond to a specific request, and I cannot expect them to understand the ongoing process as I do. Communication, also with ups and downs. No one promised humans a predictable life, we can just work with what we have, but also make time for self care, rest, and time to resist jumping in to every perceived need round the clock - we need time on and time off.

You're right that spouses often have different feelings than adult children, Angelfire, though many spouses also need respite if caregiving goes on for many years.

Yet, they aren't looking to siblings for help. I'm so glad that your situation worked well for you. It's wonderful to have such a close marriage. You must miss him terribly. Blessings,
Carol

I think that you have left out a group because they just don't fit the agenda you have. My husband and I had 18 years togather, the last 3 I was caretaker. Never once raised our voice to each other because we never had a reason. He made the best choices he could and I did too. We loved & respected each other and would never think of dumping our own frustations on each other. He deserved the best care he could recieve from the one person that he loved and trusted the most. I wanted to make his limited life the happiest that I could and that made me happy. He was the most honorable and courageous person I have ever known, even in the roughest times in his life. When I tried too hard he would pat me on the head and smile his sweet little smile that made my world right. I loved every moment that I had with him.

Recently one of my cousins, actually the only one who has ever come and sat with Mama (sat being the operative word) but she had come for a visit and I did invite her because she was very depressed and I was worried about her...Well, she was here for four days and because she had totalled her car I had to go and get her and then take her home for one thing...But....she slept til 11:00 every morning, would not lift one finger to help me with anything....wouldn't even take a bath..just sat and sat and sat and played Candy Crush on her tablet...even the HHA who bathes Mama three times a week came on one of the days and she insisted on sleeping on the sofa where Mama is , and the HHA and I were busy getting Mama ready for the day and my cousin did not even wake up ...I kept telling myself..do NOT get her coffee this time...make her get up and get it herself...I kept telling her, there is hot coffee in there..and she would say..oh, I"m fine and she would simply not get up and even get her own coffee, finally I was in there getting my coffee and I just wanted to know did she just not want coffee or was she waiting on me...so I said..do you want me to bring you some coffee..and she excitedly said "SURE"....I was so ready for her to go home...at one point she even said..you look so exhausted...I thought....ya think??? in her defense I think she may be getting a little dementia herself....she is a good bit older than I am...but I had enough of that visit to do me for a long long time....

Maybe my brother tries to help or thinks he is helping, but I have repeatedly told him, just visit with Mama, sit with her, I don't expect you to clean the house (and don't want him to because he messes it up worse than he helps and also goes on and on about how inept I am at it...but his big thing is the lawns...he will get out there and blow the leaves into these huge piles and just leave them sitting there..soooo instead of my being able to just rake and get it to the curb as I am able, I then have to spend an entire day or better moving those enormous piles of leaves because if I don't it will burn the grass underneath..so he will do something that CREATES more work for me ...oh well...after all this time I know it's not going to change, so I suck it up and deal with it...

Yes Hope, parallel lives. And that is how it is in most cases. It is utter nonsense to list excuses for what is just self absorbed, uncaring behavior.

Katiekay, I feel for you as well. My brother never offered any help at all. He actually came one time(he lived about 1,200 miles away) to "help" and did nothing. He sat on his rear end, I had to ask him "could you go get the mail", "could you bring in the trash can", this was a 45 yr old man. Not a teenager.

One relative said to me said "well maybe he doesn't know what to do".....PLEASE, than you ask. But a middle aged person should be able to see if you're busy taking care of the parent you do some minor chores. I mean he was actually sitting outside talking on his cell phone bragging to a friend up north about how it was warm....LOL.

They either care or they don't. You can't make them. But rest assured once the parent is gone they magically manage to get there.

"Rant" away. You have plenty of company and, from the sound of it, a very good reason. Take care,
Carol

In my case my siblings only offer small tokens of help. I believe this eases their conscience and they truly believe they are doing their share. They are not willing to offer enough help because they do not want their lives effected in any significant way. They want to go on, have careers, vacations, friends, nights out.

I think the other reason when they do offer help.. it is really like Hope describes.. it turns out to be more work for me. Lets see.. there was the offer to keep my parents for a few weeks.. of course if i drive them 12 hours and come pick them up.. my elderly parents.. and my dad with dementia..And.. I guess i am supposed to take time off work at my own expense to do this little chore.

They have no concept that I cannot tell them how my Dad with dementia will react to being away on a trip like that. My instincts tell me he will not react well.. he will be traumatized. Of course, my parents want to go because they imagine how the trip would be 20 years ago.. when they were independent. So...its not that I don't want a 2 week reprieve.. its that I don't want all that could be involved.

The other problem is they are not close enough to the situation to know what real help would be.. or they don't want to accept my pleas for "real help". They have their own ideas what my "help".

I have begged them... just call them, video chat with them.. help me convince them to get outside caregivers so that I can have a reprieve. They send a watered down email that is supposed to "convince" my mom.. and that was their big contribution. Most likely they do not want me getting outside help because it will spend money.. which could end up being their inheritance..

My mom has even agreed to pay any expenses for them to come for a visit. Just to come and spend time with them so that I can have a reprieve would be a "real help".
My sister did come (at parents expense)when my dad had knee surgery.. but only went to see my dad the first 2 days she was here.. just couldn't take it anymore... so layed in bed the other 2 days she was here.

Ok.. I need to end this vent...lol. I should have known not to start reading this thread .. it kind of got me going.

yeah, I LOVE the whole FREE ROOM AND BOARD.. thing...wth

wow...sounds like parallel lives Irish...yeah, I understand. I have also gotten a LOT of criticism for not putting my Mama in a NH...I'm not putting those down as some of them are excellent, but for MY Mama in her frail situation and total inability to speak for or care for herself, I was not about to do it....And again, don't get me wrong, not complaining that I am here...I love my Mama, she has been the best of Mamas and a lovely lady all her life, but it is just simply that while he may "love her"...my brother is absolutely too selfish to put his life on hold for anyone..and the sorry choices he has made for the women he has married...they are beyond selfish....self absorbed, self centered, and the only way they can justify their actions in their own heads is to discredit everything we try to do...I can tell you their lives have not missed one single beat. my brother's biggest concern to date has been for me to be sure to buy a burial policy for myself because as he put it, he doesn't know what they would do with me if I don't...I told him...yall haven't worried about it while I'm alive, believe me I don't care what happens to my remains when I am gone...ugh...sorry...I got off the thread...but I think it is just offensive when anyone gets angry at me for not "accepting help"...heck, I'd accept it if it WAS any help...but their idea of help is never help, it's just more work....and then they expect accolades forever for what little they think they did.