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I am Not a Paid Caregiver



I take care of my stroke survivor husband... been his caregiver since his stroke in 2004. I do not want a job as a caregiver to others. Caregiving is exhausting, but I do it out of commitment and obligation. When I get a break from it and leave him with paid caregivers, I don't want to spend my time taking care of someone else............I need the breaks. That doesn't sink in to an elderly neighbor who knows that I care for my husband, and expects me to help her out since I am a caregiver.


Over the past couple of months, this old gal has been unable to drive because of a crippled up hand from arthritis...she can't grip the steering wheel with both hands, which makes it really unsafe for her to be behind the wheel. One of her sons has been using her car anyhow and running back and forth from his place to work on his truck in her carport. He's there almost every day, but it seems she can't get him to stop and pick up a few groceries for her when she needs something, so she's been asking me if I go to the store to get this or that item as she needs things. I didn't mind doing it a few times, but it was getting to be a habit. A gallon of milk here, a dozen eggs there, a couple small bags of flour for baking, some condensed milk for baking.....it all adds up. I have suggested that she try using one of the grocery shopping services available in our area, but she refuses .....using the excuse she only needs a few items. She could also hire a caregiver for $15/hr. to take her to the store and shop with her, but she doesn't want to pay for that.


I went to the group potluck on Monday night and this neighbor asked me to pick her up. She hadn't been to a potluck and meeting since last January, probably because I have been avoiding her since she expected me to help her with everything. I didn't want to feel like her caregiver when I was paying someone to watch Gary. In December her kids all pitched in and got her a really nice walker with a seat that opens to hold items inside, or use for a tray to set her purse on. I told her as long as she was planning on taking it to the potluck so she could walk up to get her own food, I would pick her up. I still had to help her in and out of the vehicle, and load and unload the walker for her, but I figured she would do okay once we got to the potluck. When they announced that people with special needs should go through the line first, I told her to go ahead and I would wait till they called our table number before I went. She insisted she could not dish up her own food with her curled up hand, and needed me to do that for her. I was both shocked and ticked off at the same time. The whole purpose of leaving Gary home with a caregiver was so that I could go and not have to deal with waiting on him. So I ended up waiting on her instead. By the time I assisted her with filling her dish and getting her back to the table (because she had to stop and talk to everyone along the way), the line was backed up and I waited till most of them had finished before I went up to get my plate - by then everything was cold and well picked over. I didn't really enjoy the evening, and then got upset with myself.


I soooooooo need that vacation in Hawaii......and I'm hoping Sue doesn't need me to dress or feed her......3 weeks and counting.......look out Honolulu!!




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Oh I so understand where you are coming from.    People figure since you haev all that experience and hubby is not going, they can rotate into his spot, or use you for errands when your out anyway.     I remember, before strokes, but the same mentality.   This lady across the street said she was sick and her husband was mad at her and that he said he wouldn't take her to the doctor, and he hoped she died.    I'm a late go to bed person and a late get up.    She says her appt is 9am, I gulp and say I'll be ready to leave with her around 8:30.    I get up the next day, take care of my 4 cats and 2 dogs, and get myself self ready and look across the street.    There is a car in her drive.   hmmmm.... I don't have her phone number and don't know what to think.    The car is there for 4 hours, and when it leaves, she calls me and asks if I can take her to the bank.    I asked what happened with the doctors?    She said, her cousin dropped by and she decided not to go.    I said, so..... you had family right there with you, and didn't ask them to go to the doctor ,and you didn't ask them to take you to the bank... and they finally leave and then you call me (we hadn't really ever talked before the day before!)      THIS IS NOT A TAXI SERVICE!     It was very hard for me to get ready to take you this morning, but I thought you were suffering.   I got ready for that, but no, you wouldn't think of asking others who are right there for help, but don't mind asking me, this is not happening.


These people have the mentality that they won't bother those who are coming ANYWAY, why not ask you that they don't really care about, so if you get ticked off, they don't care anyway.


I do a woman who did this to another neighbor, and her husband told this lady that he would make sure his wife called her EVERYTIME she went to the store to see if she needed anything.   The woman thought the husband was a saint!   Not really, I notice he went out to work everyday and never once called her to see if he could bring her something, but didn't mind volunteering his wives time away.   Well, it all came to a head when the old lady boarded her car and went to the grocery store and saw my nice neighbor there shopping (who had been out at the doctors and stopped at the store on the way home).   The old lady made a big full arm point at her and loudly exclaimed "I CAUGHT YA!"    There ensued a terrible public scene where nice lady tried to explain and hateful old lady made herself look like an abused senior to everyone standing around, and my nice lady neighbor was forbade to ever come back to that store!    Nice ladies husband died, and she moved away, and helpless old lady that had kept her a slave for years, was seen dressing up and driving out in her car every single day.  


There's a lot more, like her trying to get me to water her garden everyday after she (in her 80s) had thousands of dollars of plants/roses installed.    I did once, and then saw where it was going and told her, look, my yard has no flowers, no roses anymore.   That's because I didn't get anymore when they died, because I knew I wasn't able to care for them, I can't do this everyday, or I'd have flowers of my own.


I would not have felt bad to help a lady like the one you know, if her son wasn't there ANYWAY, and had no family, BUT, that would be if my life was normal.    You cannot possibly pay someone for a 'free' day, and then end up being a free worker for someone else.   It's the same old thing where caregivers are looked over.    When Bob had his stroke I had a furnace man in here who was trying to sell me a big item, and gave me all kinds of things to look up.    I was on the internet non-stop then, looking up stroke stuff.   I told him to just tell me, I didn't have time to search the internet to see what he was talking about.    There sits my husband in a wheelchair, really down the hatch then, and you'd think he'd know I might have my hands full, but replies, I see your computer on, so I know you are already on there a lot.   It's amazing what people think you have time for, if they even see you doing something like handcrafts, why don't you get up and work so your house would look better?    Well, it's not going to, because this is MY therapy, and I need it.   


Hee, hee, looks like I'm on a rant of my own.   I'm just so mad for you that you pay to have time to yourself and then someone takes it from you.    I guess the next time she called me, I'd say, I am a full time caregiver, I do not get holidays off, nor weekends.  I cannot be someone else's helper, as I'm already over worked, and desperately need some time where I can just relax and have a moment of myself, that isn't about working for someone else.  ~or~ your son comes all the time anyway, and I have my hands full with all I'm already doing.   You're going to ask someone else, besides someone who is already a full time caregiver, ask your son.  


~or~   No, I can't do it.   I can't do more than I'm already doing, ask someone else who is not already a full time caregiver, who never has a minute to themselves.


~or~ No, sorry, I have a lot of things to accomplish and I can't do it.  You need to find someone else who can help you, or if you can't care for yourself anymore, go into an assistance type place.


~or~ Sure, ok...  Then when you get home and don't bring the stuff, and get 'the call'   - Ohhhhh!    I totally forgot!    Then let the rest of the request be of the same manner you either say you will, then forget, or you don't answer the phone at all.    I can guarantee that she and her son who isn't lifting a finger to help with have a lot of bad feelings about what a bad person you are!


and the (un)pay off.... you will still feel guilty, because someone who doesn't care about all you are already doing and wishes to enroll you as their caregiver (the list will get longer of things they need), will be upset and think you are unkind.    


I think I'd have just told her, no, I'm paying a caregiver to watch my husband so I can have time off, I can't do it.... or at least have filled my plate at the same time.... depending on if I actually had any relationship with this lady or they were just looking to use me so they didn't have to spend the $15.


Well, I'm rambling for sure, I just hate how people think we are not doing enough, working hard enough, trying hard enough, haven't given anything up (which we glady give all for our loved ones).    Don't let this happen again, just don't do it.   Block her number!

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Hi Sarah, I just want to say do not feel guilty about your neighbour, you are allowed to put yourself first, and she is not your responsibility.  It sounds like you are going to need to be assertive with this lady and explain that you are unable to help her because you need that non caregiver time, your time is precious and even her little jobs while you are out create a burden you don't have the energy for.  Maybe emphasize to her that for every minute you are away you have to pay someone else to look after your husband.  (Even if you do sometimes leave him alone, the principle still applies) You may need to find a way to talk to her family or find out who her friends in the village are and remind them that she needs more help than she is getting.


Have a wonderful holiday


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Sandy,  I had this same neighbor come over and sit at my house on the day her kids hired a carpet cleaner to come in and clean all her carpets.  They stopped by to pay the man before they all took off to meet a friend for dinner, but they couldn't take their Mom along.  They needed to get her and her 15 yr. old blind and deaf dog out of the house so sent her over to me for supposedly a couple hours.   We couldn't sit out side to visit because the exhaust from the carpet cleaners van was gassing us out, so she came inside with her old stinky dog, and kept Gary from his nap.  I finally had to leave when my caregiver showed up to sit with him, so I helped her back across the street to sit on her own patio as the guy was finishing up.    I thought it was especially rude of her kids to assume that I had all the time in the world to entertain her, and all they had to do was write the check and leave.     



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That thinking that we are home anyway with all the time in the world, really burns me.    I remember some neighbors wanted to come see Bob after  his stroke, when he was still really exhausted and struggling.    I told them that I had to get him ready for a visit, so we needed to set a time, so he would be at his best.   We set 4.    I figured they'd stay 1-2 hours, I'd feed him and put him to sleep after they left somewhere between 5-6.    At 4 o'clock, Bob was in clean clothes, and freshly 'changed' (which last about 2 hours) and wheeled into the front room, where the TV isn't.   We sat in there, with Bob going down hill and getting more exhausted waiting.   They showed up at 6:30, at which time, he could barely sit, and by the time they left had peed thru all his clothes... oh and while we sat hungry they explained they had decided to go out to eat.    They called again in a few weeks, and I explained to them more thoroughly, all I needed to do to get him ready and he had a 2 hour window, once ready, so they needed to come at the time we set.   He apoligized profusely and said they had always been very punctual people and would be there on time.    Same thing, got him ready, took him in at 4 and they showed up at 6:30, decided to go out and eat again.    Now if they had called me and told me they were wanting to go out eat, I'd have fed Bob then and put him in bed, and woke him up later for maybe a 7pm visit.   But no, they let him sit there, ready, with a 2 hour window, and were 2.5 hours late.  If they had only bothered to call me, but as it was, they might show up at any moment and so we had to sit there.   They called a 3rd time, and I told them it was just too difficult to manage, we couldn't do it.  The end.    


I have really found my voice since so much has gone by.   Now I would have just met them at the door and said that although he had been ready, his 2 hour window was up and it was time for him to eat and go to sleep again.


I also wonder if that neighbor doesn't ask family for help because she is trying to keep it hidden that she can't make out on her own, so the family won't decide she needs to go into care.   I do understand that, but if the truth is that she really can't make out on her own, you can't be the one that saves her.


Now here's a funny thing (not the laughable funny kind).    Not long after Bob's stroke, my mom began to have blood pressure problems, and this one night she called and was having a really bad time.    I put Bob to bed and rush over there, and spend hours into the night, taking her blood pressure and heart beat, until her meds finally kick in and she is better, and I know I won't have to call 911.   She says, "well, at least you got a little break from taking care of Bob, and some time to go out, for a change".     Me - no words.... there just weren't any.

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Sarah:  Ditto on all the feelings you are having along with all that Sandy said as well.  I think you should just say the next time that my pay rate is $20 an hour...


I could respond with a few stories that are as equal to what has been said but today I am really tired and can't seem to find energy to type all my thoughts.  I do however, want to send a hug...and say, I totally know how you feel.


I am saving this blog and will come back with a comment later after I have rested.  We tried something new today with my husband which required far more than I wanted to do...



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You are so lucky to be there and have friends around you. I hope you can be in every memory making moment not as a caregiver but as a friend. That changes everything for the person in need. Friends are priceless.

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