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I'm a Caregiver and I HATE IT!

Bjxxxx

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Also there are many aides that do not actually speak English. Spanish, French, Patios, sometimes Russian, Polish or Ukrainian. You have to communicate almost like you are dealing with really small children. Some understand English, but can’t say sentences. Some understand and pretend they don’t if they don’t want to do something. Some are very unreliable and even though they are supposed to be there a certain time, are always late (or don’t show up). That may mean you are late for work. They may not understand you have to be on work on time.
 
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Bjxxxx

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Hopefully this won’t go on too long, but there is something called a Hoyer lift. They use them in hospitals and nursing homes to lift someone up.

Also there are sliding planks (usually nursing homes use two people with this) so that the person kind of slides from the wheel chair to the bed. This can be dicy because you have to balance it just so. If it falls, then that’s all she wrote, and you don’t want to add a broken hip or something to all of this.

This all requires that the patient is cooperative.
 
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Indielocks

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Some a very unreliable and even though they are supposed to be there a certain time, are always late (or don’t show up). That may mean you are late for work. They may not understand you have to be on work on time.
OMG!!! You have proven time and time again in this thread the depth of your knowledge on this subject. And no matter how much I emphasized the importance of being on time she always had an excuse as to why she was late.
 

Indielocks

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Hopefully this won’t go on too long, but there is something called a Hoyer lift. They use them in hospitals and nursing homes to lift someone up.

Also there are sliding planks (usually nursing homes use two people with this) so that the person kind of slides from the wheel chair to the bed. This can be dicy because you have to balance it just so. If it falls, then that’s all she wrote, and you don’t want to add a broken hip or something to all of this.

The all requires that the patient is cooperative.
I'm familiar with these mechanisms. She has a hoyer and a sliding plank but unfortunately we've never used them.
 
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Indielocks

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I’m assuming that you don’t have a husband or kids since they weren’t mentioned. You need to hold on to every dollar you have for your own enjoyment and future living expenses. I hope that you’ve met with a lawyer who will make sure that your assets will provide you with the best care when you are no longer capable of taking care of yourself. It’s very important that people do this because this is how they end up with family members and “friends” who take financially advantage of them. Your nieces and nephews may not want to be bothered by their own mom because she has no money, but they'll definitely show "concern" for you.

I am someone who planned on never getting married because I had requirements that weren't negotiable when it came to men. This led me to plan for my senior years when I was in my 20's. One thing that I figured out early on was the importance of owning a home that was paid off. People say that social security pays very little, but it's really supposed to pay for the basics since it's assumed that you'll be in a fully paid home when you retire.
Yes - I'm single with no children. I have long term care insurance, savings, a stock portfolio, real estate, my house is paid off and I hope I've prepared enough. I hope.

Are you married with children?
 

Bjxxxx

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OMG!!! You have proven time and time again in this thread the depth of your knowledge on this subject. And no matter how much I emphasized the importance of being on time she always had an excuse as to why she was late.
Hi, I don’t want to monopolize (a little too late...LOL), and want to share this info. I’m doing it on the board, because there may be others who can benefit. I wouldn’t put too much personal info on here, because doxing is a real thing in these LSA streets. I hope I’ve said enough to spur you into action, and that you find a tenable solution.

So...
1). There are good aides, honestly I wrote about some negative experiences, but we had at least 2 who were beautiful people. One became like a member of the family. Honestly she didn’t speak English well, but somehow she and my Mom were able to communicate. After time she got better, I spoke Spanish decently and sometimes when I would leave for work, they would be singing Christian songs together. That just shows you. She would arrive early, and was super reliable, amazingly clean, and really so gentle and caring at heart. An amazing woman, I would not have made it without her.

2) At this point if I were in your situation. I would:
(A). Reach out to the County Division on Aging, try to get a Social Worker involved. They may not call you back right away, but give it 2 days, then call every day, morning and afternoon. Leave messages, if there is a Secretary or Admin, get cosy with them. Make them know your name until they get back to you.
(B). While waiting for a call back from Social Services, research the nursing homes in your area. There are several ratings websites for nursing homes...These have reports.





Also if possible at lunch time, go make appointments to visit them. Just stop in and tell them you are anticipating placing a loved one, and wanted to know more. You might also do this on your way home from work, schedule 30 minute sessions to get the highlights. Pay particular attention to the smell of the place, whether the people greet you as you move around (the staff may reflect the way Management treats them and the patients, great places have busy people who still say hello and smile).
Look to see if they have a lot of patient activities, some places have them on walls or bulletin boards. Look to see if they have a spacious place for patients to sit, like a day room, or other such areas. If possible find out if they are affiliated with a local hospital, e.g. there are Doctors from that hospital that serve the patients. Find out how many patients each of their doctors typically take care of...Some places have 1 doctor for every 60 patients, some for every 30 patients, some it varies, but it’s a good question. These questions will also alert the Administrator that if your sister comes, they need to be on their toes, because you will be watching. Another thing to note is if your Sister’s doctor works with any particular nursing homes in the area.

(C) Since you posted a profile (I would take down the perosonal info actually), I would pursue the things I discussed offline.

(D). Make sure to have personal time for doing something you really enjoy. At least set aside an hour in a week for soley something you love!

(E) You mentioned we are looking into paying down resources for Medicaid assistance. Of course the Social Worker will help navigate this, and hopefully they are knowledgeable about the system. However my experiences with several different cases is that it seems best if possible to place her in a high quality place of your choosing, then let the resources run out. By the time they do, hopefully she will transition to full coverage on Medicaid and will already have a bed in the facility.

The other way, (where you try to pay out of pocket until there are no more resources, then get in the system), you have to wait until a bed frees up in their Medicaid system. The problem with this is you may be in a very poor facility, or one that is known for various infractions. You would still want your sister to get the best care possible, within a reasonable distance from you.

Speaking of which, try to find facilities which are within 30 minutes of your home (and work) if possible. Think about if you want to stop by at lunch time or on your way home from work.

(F). Getting family buy-in. Since you seem to be handling this, and the siblings have been quiet, they may be all for this at the start, then start to wonder what you are doing with all her money. Soon even the people who seemed to have been on your side will say things like “well I don’t really know what you are doing, you could be stacking her money on the side to have all that ish you have”. That is why my private suggestions.

Her children probably won’t pay attention at first, and then will wonder where her money is going and what are they going to get. You sound like such a nice lady, but you have to put on your outter DMX, and tell them “mind yo F’n business lady”, I joke, but for real, keep very good records.

Keep all of her things separate from yours.

(G). GET BURIAL INSURANCE...this should have been at the top, you should do this today. While you personally sound as if you are in a good financial spot and could pay for services, your sister does not. Although it’s probably a good idea for you when you as well, since you can determine exactly what you want. This was one of the best moves, for several individuals. I assure you it makes the transition period, a difficult time by nature, at least bearable





(H) For your own future, it is not clear if you have someone in your family you can talk to. Long term care insurance is great, but it has some of the similar pitfalls. You have to have someone to adminster things if you become incapacitated. You should have someone you can explain all your ish to. Actually more than one person. We discussed it, but really make duplicate documents and create something for easy access to whatever in case of emergency.

I would also do this for your sister.

(I). For ease with the aides, and various doctors, I kept a spreadsheet, which I printed out. It just looked like a chart with columns, and could be done even on white lined paper. It had Date/time, Event, BP/Temp, Outcome. When I had things I wanted the aide to do, I put them on the sheet. Date/Time, self explanitory, Event, whatever happened or what I wanted the aide to be sure to do, sometimes it was wash hair or something like that. For Nurses when then came to visit, I would ask them to just put regular check, and any notes or anything they noted. It took a few seconds, and they are used to doing it for their own charts anyway. I had several that were very thanful, because the nurses changed (and the Agencies as well), and they could just see past events.

BP and temp were on there because when the nurses come, they always take that information. If things change or there is a health emergency, I also kept it tracked there.

I put one up for every month and I kept it on a little clipboard on an accessible shelf near the bed. Then when people ask you what happened when, I could just go back to that clipboard, and have the date, and what happened. You may not be like me, but I found having the paper there was good. If I wasn’t around, the nurse practitioner, nurse, aide or doctor could see the progression of events. Even if the patient could not speak or remember accurately. With dementia, there will be some days good and some bad, as you noted. You could even note when there are significant changes or differences in personality. I have suggested this to others, honestly most did not do it. Then had to try to recall the exact progression of events, however that was their choice.

I did the same kind of thing with a schedule for the aide. Obviously they could put their own spin on it, but it outlined what things I thought were reasonable, and had a little box for a checkmark. The ones that stayed actually kind of stopped using them after a time, but I did check them to see if they needed anything. Also if I saw some things were not done.

This also helped in case they (the person) changed, or were only there for one day. Some took offense, like “I know what I am doing, get out of my way”. I immediately told those folk, don’t take off your coat, your are leaving. The reason is that some people that come in your home (or your sister’s home) with that attitude, already think they are running the show. You will find them rummaging through closets that are nowhere near the patient, talking about I was looking for towels, or I was looking for soap. Well all the towels you need are in her room, provisions have been refreshed, there is nothing in these other places you need to be looking for.

The other good thing about that check list for the aide is whenever I was running low on things, I told the aide to write down if she needed anything that I was about to run out of. Do not wait until things are empty. That worked out well also.

(J). Reach out to those caregiver support groups. You may find an incredible resource of information. You will also see that you are not alone, and it will help to hear other stories. You may even see that you are actually in a rather better place than you thought, considering the alternatives.

One word of caution, even though it is difficult, try to stay positive, and I think this is why I really Loved my Mom so much. When she did have to go to a facility when there was a situation that required it, we’d be sitting there, usually I would bring some nice treat, and she would say “I don’t know why you have me sitting around here with all these miserable sick people.” Then we would break into hysterical laughter. Mind you, she required Complete care, the only thing working was her mind and heart. She was consistently positive about everything, never worried, and when I tell you she defied the Doctors who said she would be dead by 28, then by 32, and so on, even surviving breast cancer. Also I heard it time and time again, people would say, I came to cheer her up and here she cheered me up...

I am going to limit my online time for a bit (except for maybe movie trivia), but wanted to share these things with you. Good luck, and good luck to anyone else who benefits from these tips. It would make me feel great if I helped anyone in real life.
 
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Bjxxxx

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I keep saying that’s it, but just thought of two more things. On that sheet for the events, with BP/Tem, I also put my full name, cell phone, work number, any other numbers where I might be reached (overnight or something). I put her Primary care doctor’s name and phone number, the nursing agency name and nurse’s phone number and an emergency person’s phone number.

Another thing I wanted to add, and if you found some of the other things to be true, trust this. KEEP YOUR BUSINESS TO YOUSELF at work. Sound’s like you have something you worked hard for. So, the first couple of times people may be understanding. When (if) you have more emergencies, you may start getting the stink eye. Then it will turn to something more tangible, like warnings, etc. I mean obviously you may need to speak to your direct Manager, but when others ask, just say, you are doing your best.

Also about staying positive, it’s tough, but do not allow anyone to guilt you into second guessing your decisions, once you make them. You would be doing the best you can at the time with the information you have. Allow yourself that.

Also allow yourself to make the best decision for you, since you have the most to lose in this whole scenario. Truly, when you decide something, do not let a lot of outside folk who will not be there, and haven’t been there drive your future. Sounds as if you put a lot in your life into doing the right thing and continue to do so. Therefore trust yourself.

ETA: Don’t know if you are a praying woman, but if so, then pray and trust God also.
 
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lover86

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I would never try to make someone feel guilty for not wanting to give their entire life over to another.
I am the same way. I wonder do people feel like women should automatically desire to take on the caretaker role of someone that is not is there child ? I will actually feel guilty about someone putting their life on hold for me . I know being a caretaker is hard from experience .
 

lover86

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I feel so many types of ways about this. I take care of my mother w/early onset dementia, she lives about 2 miles away from me and is very self sufficient. I cook her meals and pay her bills, run her errands etc.

I moved back to northern Cali when she fell and sustained a head injury 6 years ago that caused short term memory loss. Obviously I’d do anything for my mom and we have a really good relationship but caregiver burnout is real. When she first had her accident I lived in with her for 18 months and put my life on hold to care for her myself because the number of abusive people in caregiver roles is alarming.

I couldn’t imagine if I didn’t like my mother and was forced to care for her. Not trying to insinuate anything against OP, but this whole situation sounds awful with potential for abuse to cut both ways. I hope you find a way to lighten your load.
Yes the situation is very different when you caring for someone that you don't get along with . Very stressful and tiring to the point where it starts affecting you physically.
 
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CuuntyAunty

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Yes the situation is very different when you caring for someone that you don't get along with . Very stressful and tiring to the point where it starts affecting you physically.
I get it even still. Me and mom are close and always have been but it hasn’t always been an easy relationship. I was a wild child and she was young then and on her own bµllsh!t also. Luckily we worked all of it out by the time I was 17-18 but she’s difficult and I’m stubborn. We’ve had our days trust me.
 

gama

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Well, that coin flips both ways because that's exactly what I feel she is telling me. She is very demanding and she is 'aware' enough to know how much of an impact she is having on the quality of my life. But she doesn't care. She truly does.not.care.
You said she is in her 70s with mild dementia. So how sane is she?


EXACTLY!!! My sister was very physically beautiful and always felt entitled. Always been selfish too and it's now manifesting itself to the nth degree now that she's older and in need.
Caregiving is hard, not minimizing that but the way you wrote this sounds like you have other issues with her.
 

doeeyedgirl

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The lovers are long gone and her children are reluctant to move her into their homes. Can't blame them - she really didn't invest in her children's lives when they were young but now that she's old and needy she has the nerve to think they should interrupt their lives and do more.
See, this is why I side eye people whose reason for having children is: "but who will take care of me when I'm old?" A lot of them are selfish parents who are only interested in what their kids can do for them then have no shame in burdening them later. Whether you have kids or not, this is the importance of having insurance and money saved up. Popping out babies is not a disability plan.

That said, they are still her children. They may be reluctant to take her in but so were you. It's not fair for one person to take care of everything. Can you work it out for them to watch her in shifts?
 

Indielocks

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That said, they are still her children. They may be reluctant to take her in but so were you. It's not fair for one person to take care of everything. Can you work it out for them to watch her in shifts?
It was recommended that we work in shifts but her children really don't want to get involved that much and turned the offer down.
 

Indielocks

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You said she is in her 70s with mild dementia. So how sane is she?
Caregiving is hard, not minimizing that but the way you wrote this sounds like you have other issues with her.
With her dementia she goes in and out.

Yeah, I have an issue with her --- I wish she spent more time trying to raise her children instead of being a party girl. The way men are I knew this day would come. Men -- esp. the ones that hang at clubs -- are not good investments.
 

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If you can’t handle it now, you should make arrangements to place her somewhere.
Dementia doesn’t improve with time. She’s 70 and you’re an older lady as well. In the end, you WILL be wiping ass.

When she becomes angry and combative…When you have to start bolting down the damned doors to stop her wandering or locking up the household chemicals - practically childproofing the house - you’ll see what I mean.

If you can’t handle it now, you won’t be able to later.
Put her in a dementia/memory care unit and be done with it.
 

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