Is there was a thread or support discussion for caregivers who care for private clients, not their family?

I'm all for wiping the slate clean and starting over.... maybe the new ones will be more effective in getting him to cooperate... our elders get quite comfortable with the same faces and the way we do things..... when Gene tells other NO... they retreat... when he tells me NO... he knows he will eventually.... but your dad sounds like consequences mean nothing to him... I feel bad for you but do applaude your for not moving in and taking this on yourself.... and sometimes they will do things for a stranger that they wont do for family.... he sounds like a hand full.... and please who ever you hire... please inform them of this.... that will run a caregiver off faster than anything if the family has withheld important information.... like he is very noncompliant..... if they know this ahead of time... they may have some new ways to get him to cooperate.... wishing you luck on a workable solution... please come back and let us know how things are going.... and don't apologize for rambling... that's what most of us do anyway, so we understand... hang in there.... something will work out....keep us updated....

P.S. Sorry, I'm brain-dead myself and rambling at this point.

My father became progressively more and more impossible to reason with, and now with a brain injury, there is no comprehension yet on many levels. But pre-brain injury, to give one maddening example: the guy had a broken spine, was wearing a back brace full-time, had been told by his PCP to attend a Driving Rehab clinic, we had all reasoned and begged and pleaded with him not to drive, talked about the danger to others and himself...I even burst into tears at one point, which was actually the most effective method, because it yielded a sincere promise from him not to drive "until the orthopedist says it's okay." Stupidly I believed him, and he went out in the car soon after and smashed into a mailbox, which could easily have been a person, when he stepped on the accelerator instead of the brakes, explained it away, concealed the incident from me, got the car in the shop to be repaired before I could see the damage, then lied to me about it. (My Mom's aides told me what really happened.) So no, he cannot be reasoned with. After years of him begging and cajoling my Mom to drink more fluids because she had been rushed to the ER dehydrated several times, now HE is the dehyrated one and there is no convincing him of the necessity to drink more. I think the real shocker will be when he finally gets to come home and on some level it dawns on him that he has not returned to his former independent self, running the show.

I don't have it in me to run a mini-therapy group for all of our aides. I just don't. Several people have suggested the path of least resistance would be to clean the slate and let an agency handle the new situation. My wife and I currently look like we've been living in a war zone---we had to move in and take over living Dad's life for him, running his household and Mom's care, about 6 weeks ago, and I couldn't believe what a 90 year old had been handling on his own! We are both exhausted!

Ok .. you have to be a really, really good mediator to do this, but, if you're able and willing ... get all the aides sitting in the same room together, give them the opportunity for a 'no fault' bitch session, get all the tensions out on the table and work out some solutions, and then offer the alternative: "We all work this out together, here, now and no more of the Downton Abbey syndrome, or we wipe the slate clean and start with people who are willing to work together on OUR terms. This is a team effort and we only want team players." Then stand behind your words. (I have a feeling that's a non-issue for you, personally.)

As for dad .. is he also so narcissistic or so mentally declined that you can't reason with him? "Dad .. look .. I know you love your independence and I love that about you, too, but ... do you REALIZE how much it hurts Jennifer, your night aide, when you try to climb out of bed and fall? Not just makes her feel bad for not doing her job, but it HURTS her to see you in pain. Really, dad? At least let her come and watch, so that if something goes wrong she's there."

Edna came home from her last surgery with an altered state of mind: more cognizant, but less short term recall .. it was kinda weird .. but she suddenly thought she could just get up out of bed or the chair and walk. So, she'd start to, yanking this that and the other thing out of the way and by the time I got there and asked what's up, she was naked from the waist down, shoes akimbo and sliding out of the chair. "Gotta get up" .... "ok, dear, do me a favor .. lift your right leg .. good, love .. now .. bend the knee .... nono .. the right one. Oh? can't? Gosh .. think that'll work for walking? like some help, yet?" Now, at least, she calls when she wants to move. Took a bit a doing, but it eventually sunk in that help was just help.

The irony is, the better Dad gets, the harder he will be to manage, because he is incredibly willful stubborn and non-compliant. They actually begged us to take him home from one Rehab, when he was in for a spine injury and still had a brain, because he refused to use his call bell to ask for help getting up and moving around and they were terrified he would fall again on their watch, and in fact, I DID have to catch him several times. So if Dad slowly recovers from his brain injury, his default personality is way beyond those clip alarms and gadgets. He has already learned how to undo his seatbelt in the wheelchair at brain rehab and stand up, and I watched aides at the previous rehab running to answer alarms and be too late. His roommate fell three times...we spoke to an agency tonight, that suggested a permanent 24/7 live-in + two 12-hour shift workers to start, and hopefully reduce the shift worker hours over time, as we see what's really needed. The most difficult part, as I've said, is if this means letting go of most or all of our present aides, many or most of whom might consider themselves "lifers" as well and have been very devoted to our parents. Yet at the same time, the house is riddled with gossip, territoriality and competitive snarkiness that my wife fills me in on. She thinks she has been plunked down in the middle of Downton Abbey! So in some ways, it would be simpler and easier to turn it all over to a single agency and all new people, but that would mean Dad coming home to strangers instead of the familiarity of the people he knows, and despite what I said, they DO have Mom's care quite well covered during her waking hours from 8-8. Oy. So complex.

Elie ... btw .. I think a lot of the considerations you have about needing a second person present is 'mechanics'. For example, your dad being able to get up (tho not safely), while the aide is otherwise occupied can be remedied with a simple 'fall alarm' tab (it's a fairly simple gadget, with a clip attached to dad's clothes that sets off an alarm if he attempts to get out on his own). It's my guess that two aides at the same time is probably overkill. HOWEVER .. when you interview your potential aides ... ask THEM (it's a great way to get a feeling for their potential and knowledge), and see if their feedback is any more enlightening.

Elie- there are many types of caregivers, a live in is the easiest. One person they get too know and is used to. Split shifts give more opportunities for them to interact with more people. My advice is try split shifts, if they don't like "the comings and goings" (can get confusing) then look for one or two. I've read the posts, it may take a few tries to find a compatible caregiver. So don't get discouraged! I think 12 and 12 May work for you. I personally work with a client doing 4 hours each with us. Hugs to you!

Elie .. I assume you're looking at around-the-clock presence, with as-needed care. Depending on the severity of their conditions ... meh .. you probably really know all that, so I'm going to give you the benefit of the doubt. Let me, instead, offer a behind-the-scenes view of one alternative: The live-in options.

In our situation, we have just have Edna: She suffered a stroke 5+years ago and has a number of other health issues that we monitor. There are two of us who live with her. She needs 99% assistance with bed, bath, food, ambulance, etc. We are wholly responsible for the house upkeep, her health and well-being ... and just happen to love the heck out of her. We split our shifts so that I work 4 days on, my partner does the other three, and we cover each other's shifts if the need arises. We're compensated with room & board, plus (all within legal/ethical bounds). We have a rather special set of circumstances in that we're more like family caregivers than for hired ........ we're here until the end (literally .. either our own or hers). It works GREAT for Edna, her family and us, the caregivers.

We have a lot of 'down time' during the day (between meeting Edna's needs and keeping the house), so we rarely have to consider breaks, etc.

The real trick is finding people who are: compatible, responsible, knowledgeable and trustworthy. If you find people who REALLY care about *your* loved one, be somewhat prepared to balance work ethic with emotional upheavals. This is HARD work, even without considering personality conflicts that happen with living together. The people who do this work are dedicated to it .. and *koffs* don't really have much of another life.

If it were my choice to do over, we'd have a third person available. Sometimes I really DO just want to say, "god! not today .. Can Ruth cover the shift please???"

elie.... three aids for the dayand night shift, and one for the weekends... that is what we did with Marie.... She was dying of cancer and her husband had Alz....the one for the weekend will give the other three a break.... and it can be on a trial basis... to see how much care would be needed at any given time... will you have Home Health come in to do the bathing? That would be my suggestion for this part.... because the time it takes to bathe, the other person may need something..... nothing is written in stone.... you may leave it open to revision as their needs become more apparent.....
Come back and ask questions as they arise... we are here to help make it possible for your parents to remain in their home.... wishing you luck and prayers for a good outcome.

Dear Veronica91--

I know you mean well, but please re-read my question. I'm not asking whether to do this; I am asking how to do this most efficiently. thanks--eliezering

Do not make this decision based on your emotions. You may wish to do this and you may have been told that home care is the best option. Can you or your parents afford this for up to another ten years? Given the ages of your parents I am assuming you are in your late 60s 70s. are you both prepared to give up your retirement years ? Would your parents have expected this of you? Even with the best of Aides you will still be on call 24/7. What happens if either or both of you become ill?
The Aides who contribute to this site love their patients like family and would never leave because it is the end of their shift. I wish this is always the case but at all levels some will call in sick just to use up their sick days. I am sure other caregivers and Aides will gladly share their advice, just don't be rushed in your decision making and base it on emotion, take time to really think it through.

Both of my parents are 90, and Dad has taken care of Mom at home for the last 13 years, with advanced Alzheimer's. Six weeks ago, on their 67th Anniversary, and two months after falling, breaking his spine, and making a remarkable recovery, Dad tumbled backwards down the stairs, landed on his head and incurred a major brain injury. He has been in hospitals and now rehabs ever since, and literally overnight he has become someone who himself will need 24/7 care and has the kind of dementia associated with brain trauma.

Our wish is to bring him home to Mom and provide for both of them what he provided for her for so long. How many aides, and in what configuration, do we need to do this? Live-in? Two live-ins? Two 12-hour aides, 3 eight-hour? Different people on weekends? Mom can be left alone in a chair, because she can no longer get up by herself, and is often asleep. Dad can already get himself out of his wheelchair at the rehab, but doesn't understand that he can't walk on his own yet, so he will need to be watched constantly. If there was only one aide present and the aide had to change or clean Mom, Dad could be a danger to himself. Yet having two aides round the clock seems unnecessary. Has anyone figured out a good formula for this situation that won't require my wife and I to move in, but perhaps live nearby to keep an eye on the situation and manage things?

Ruth1957 how do we find your blog? I understand caregivers fears of first time bathing! Hope you helped him out, practice makes perfect!

Hi, Ruth! Welcome to the thread. You've got a lot on your plate .. hope you're taking care of yourself!!

Good morning all. I am caring for two different clients right now, in addition to running my home business and volunteering at the Boys and Girls Club, so I'm not on here much. I did want to check in on this thread, though. I have a blog, and I have my cell number in my profile. I got a call today from a young, male caregiver who was facing his first showering assignment today. He was nervous, and wanted advice. That was just so great! I'm going to call him tomorrow to see how it went, unless he calls me back. Just wanted a little advice without calling his Agency, I guess. :-) Hope everyone has a great day. My day will be spent with my younger client who has Chronic Lyme Disease.

LadeeM, I told G about my hair cause she can't see very well, but she laughed and said sounds fun! Her husband said it's very cute cause it's so subtle lol! We had a great day today. Plus haldol is being given again. She's not being mean just very emotional. Laughing one minute, crying the next. She took one this morning, didn't knock her out. Was my old G, trying to playfully bite my fingers feeding her, cracking jokes. So we will see, but they thought my hair was fun lol! Hugs back at you! Things are getting back to our normal... hope it stays that way!!

PC, please let us know what G says about your hair... glad things are settling down..... people don't realize why we hang in there sometimes.... but we know...
sending you hugs...

Glad, in reality, no one will care for your mom the way you do.... that's just a fact... but sounds like you really enjoyed your time with your friend.... and mom took a nap !!!! Awesome....finally, one that is working out for you.... so the family doesn't help or understand, but apparently something greater than us does and has given you this gift... my 'family' is the people who lift me up, who support me, who has a sense of humor.... and gives a damn if I am having a bad day.... We don't get to pick our family , But thank God we get to pick our friends.... hope this continues to be a good thing for you and mom..... so happy you had a good time.... you deserve it...lots of hugs for hanging in there !!!

Had my 'me time' today... slept almost all day...C told her son last night, she would be glad when I went home... told her son... fantastic !!! Finally something we agree on....

:) hugs to you all! Get your me time!

PC .. hot dang!! Good for you *smiles*
LadeeM .. I get it. *hugs and chocolate*
Glad .. brave of you to 'let go' enough to find the space for yourself. It's really hard to let someone else do what you know you do so well. Just remember that when you notice (if you do) any anxiety from your mom .. it might take a little adjusting. *hugs*

And, tomorrow .. respite for me. Yay!! The local casino has been gifting free room nights. I'll take 'em!!

My boss (Gs husband) is open minded lol, should get ripped on tomorrow lol!!!!

Off topic, but went and got my hair done! Feeling spunky so added some "colorful" highlights! Pink and teal. Feel like a new woman! And had fun doing this! Very subtle, but looks cute! Me time!!!

ladeeM, it went very well again this morning. I had some picture albums and scrap books out that, I think, really eased my leaving this morning. Wore mom out, she went back to bed after CG had been here for about 3.5 hours. She felt comfortable enough to go back to bed for a nap and that is a good thing. Yes, it is going to take time for me to adjust too.

LadeeC, yes, in the end, it is my choice.... but I learned many many years ago to follow my gut....it may be MY time, in my mind.... but the lesson has not presented itself yet....I am 'unlearning' right now... don't know if that makes sense to you... but for instance....I have my standards as a CG... those will never be compromised.... but I have to take an honest look at this situation.... it has always been this way with this family... who do I think I am to come in and change that dynamic? Are C and Gene very well taken care of on my shift? Absolutely. Then where is my 'battle of wills' coming from.....? Won't go into this whole thing as others will find it boring.... but am getting my answers... will I leave this job, absolutely.... but my gut is telling me to wait....my answers are coming... and they are part of the bigger picture of my life... this situation is only a teaching tool.... it ties into many issues with my son also.... letting go....getting my ego out of the way, seeing the bigger picture... when I loose sight of that, I always get bogged down in the empty and meaningless monkey chatter of discontent..... I have made my choice.... now it's about the journey and learning what I need to learn..... love you bunches..... and I actually had this conversation WITH you as opposed to having it in my head !!!! Progress... Woot Woot, not perfection.....lots of hugs for your constant support.

Glad, change takes time... it only means you have done this so long, it is very hard to let a 'stranger' do what you've been doing.... just as it takes time for her, it also takes time for you...and no, certain things the CG will do , you may not like or see the point... but if deep in your gut you trust this person.... then go have your coffee with your friend.... just as it took 'practice' to become the primary caregiver, it also takes practice for freedom... it's a new feeling.... embrace it...... hope you have a wonderful fun day with your new friend.... lots of hugs...

ladeeM I know I need and deserve to get out of the house! I guess maybe there is a bit of guilt and maybe thoughts that nobody can do what I do for her. As fat as the comfort level now it is true, perhaps only because I'm her daughter. But the other daughters wouldn't be able to do this either.

I'm going to coffee with a woman I used to babysit for when I was in high school tomorrow. Through the last six months or so she has become a very dear friend! She naturally knows both sisters and well aware of how screwed up one was then and continues to be.

I am looking forward to tomorrow. Maybe I am just like an overprotective mother. I wonder if other child caregivers feel that way. I'll let you all know how tomorrow goes for mom.

I never thought I would be typing this.... had a great day with G. Although she was crying again. She made her husband leave the room. I was rubbing her arm trying to calm her. She turned to me, said my name, and apologized for everything she did to me (her exact words). I told her there is nothing to be sorry about. She said yes there is. I told her no, and continued to comfort her. From what the family has told me she don't apologize. I could see she was sincere. She looked right at me, and I know she meant it. I hope this is a start to what was. I did tell her husband in private what happened. Was very surprised. We spent the rest of the day talking and me giving her physical comfort that seemed to really help. Once she apologized, she was very thankful and appreciative. Bittersweet day. Still got my guard up but for her to do that, well I about cried myself.

Glad, I am the one agitated and wanting to leave.... but to answer your question.... no, I am so f##king awesome they want me to work all the time everyday!!! lol I think because my approach is to simply give them time and not take it personal.... and to some degree mom may be manipulating you to keep things from changing..... give her some more time.... sounds like this CG knows her stuff.... it has only been a short while... and even if it were you or me... we would have to have time to be ok with a stranger in the house.... just a lot of reassurance on your part... and let time do the rest..... you deserve to get out of that house!!! Give it time.... sending you hugs sweet lady...

ladeeM, yes it is the same one. She will be here for five hours tomorrow. My biggest concern is mom becoming agitated. When I returned last week, the first thing mom said was "don't we have somewhere to go today?" That is always where she is when I have returned before to the point of being angry. I was home soon enough before it started last week. But I think that is where she was going. Have you ever had clients that became agitated and wanted you to leave? How did you handle it?