OT: Anyone else their parents caregiver

Hey All! I have not been in this position myself and so I will just offer my e-support, say my small piece and then get out of the way so you guys can help each other. (((( Stacy and Everyone Else )))) You know, I think there should be mandatory classes taught in senior highschool or college maybe that help people understand that there will be future challenges in caring for parents and grandparents. Maybe people wouldn't listen at the time, but when they need the info, it would be there in memory to be retrieved. TG - thinking of you today (for both reasons if you know what I mean). Anyway, my love and prayers to you all. :love:

I'm getting paid to take care of my mom (which is why I can't pay anyone else to take care of her so I can have a break. If I do, I get taken off the program or so my case worker told me). I feel a bit guilty about getting paid to take care of my mom but I won't take money FROM my mom but I think it's ok to have assistance from the programs that are provided for a person to be taken care of at home. They send me a statement every month with what my mom is supposed to give a "caregiver" for her part, based on her income from Social Security. If I weren't taking care of her and she was having to be having someone else coming into the house she'd have to pay almost $300.00 a month for her care to the provider. I absolutely WON'T take her money. But I do take the money from the program because it helps us getting more things for her we need (no one in the family will help us with her needs so it's very helpful for that too) AND it helps us pay our bills. I had to quit the job I had when my mom had her surgery and became incapacitated. I really needed the money from the job I had and when they told me I could get paid to do this, I applied for it. In doing this I have to be certified and have to have 30 hours of training in taking care of a person like my mom and 8 hour first aid certification too. They said it's state law in order to get paid to do it. I could do it for free but not for pay without the training to be an "individual care provider". I was authorized to train at home with manuals so I don't have to go to classes however the 2 hour test I have to take next month, if I don't pass it, I have to go to in class training and do the 30 hours in class setting. I don't know how I would be able to do that because I can't get anyone to take care of her now so I can have a day out except my daughter and she's not always available. But by my doing the work myself and not having someone else coming in to take care of my mom it saves her $300.00 a month and I think that's something good. She can barely afford the bills she has now to have to put that kind of money out for her care every month. That's on top of the prescriptions that aren't covered and the other things that aren't covered like OTC meds that she needs and her "personal" supplies and that kind of stuff. She barely has a dime left by the end of the month. I just wish it weren't so hard to take care of her and getting into the position that I'd have to put her in a home. That upsets me a lot that it's coming to this because I really DON'T want to put her there but I just don't know how much longer I can do this before I CAN'T do it anymore. You know? Rylee

Thanks janey, and I do know :love: Rylee - I do know....we have had a LOT of the "when do the grandparents move" conversations lately. None of us want them to have to move out of their home (they've lived there for over 50 years) but it's all of us that take care of them, the home, everything. At some point, you have to take care of yourself Rylee. Or else you won't be able to best serve your Mom either. I don't know what the "right" answer is - the "right" timeline for your family, but I hope you can find something that works for both of you. :grouphug:

I am becoming increasingly the care giver for my Grandmother as I am the only relative living close to her. The closest after me is my Aunt who is about 4 hours away.She is able to still drive, approaching 86, so she is taking herself out and about but there are just some things that I know she can do but she doesn't.

Being a caregiver to a parent is a very lonely and isolated world. I had to take a leave from work after cutting my hours. Finally at one point I stopped working because my Mom was requiring more care. My Dad finally decided to retire well into his 70s and that was kind of a break for me as Mom could not be left alone. Mom did not qualify for any programs because of their assets so any pay would have come out of their pockets. While my parents had great insurance (so they thought) it did not cover or touch any long term care.. This was another battle. They kept the same insurace plan they had when thye were a young growing family, never bothered to change things like planning for the future so it was abattle straightening out their estate. I won't even get into that one. It has been since Nov 2003 since Mom has been in the nursing home. The ONLY reason why she is there is because she required multiple peopel to meet her needs. My Dad is a frail 86 yr old and our fear was if she fell he would try to lift her(Mom is well over 200lbs). Though I am a nurse one person providing care was not doable and it was not fair to her to be denied the care she required and deserved. Of course the situation is different for my Mom as she is basically a 200 and something pound infant. She is uanable to speak or even mover herself around. However she is thriving and does smile when she sees us and will even give a kiss. I waited until I basically had no choice to place her and it happened in a way where the decision was made for us. Mom had gotten a fever and UTI which landed her in the hospital. That is when the Alzhimers went into full swing and she could no longer feed herself, speak, walk ect. The hospital suggested skilled nursing facillity.(a fancy name for a nursing home) to see if she might recover some ofher ability. This did not happen and as a result Mom has been there. Even with her in the home it is very important to be visable and advocate for her. I see her daily and wouldn't have it any other way. EZ

I know this might be stupid but the C.O.P.E.S case manager came today and she was really nice everything seemed fine. She said she thought I was doing a good job and that she didn't see any reason she'd have to make "suprize" visits however she probably would. She told me that she would occasionally just stop by unannounced because that's what they do to make sure everything is "as it should be" and no abuse going on or other things going on and that I'm really home taking care of my mom and not leaving someone else in charge. I know that I'm doing the best job I can and that there is no reason to worry about her "finding something wrong" but it's stressing me out thinking about someone showing up without notice to "check me out" in making sure I'm doing my job right. After I told the woman that I do get a little grouchy with my mom sometimes and especially in the mornings and I felt kind of bad about it but I'm not always the most patient with her. She turned to my mom and said, "If your daughter gets more than a little grouchy, I want you to call me and let me know." She also told my mom that she (my mom) was my employer and that I had to do what she told me to do and to let her know if I didn't. I know this sounds terrible but having to hear all that and know that I have to be on my BEST behavior or get sent to jail or lose the money taking care of my mom upsets me and is stressing me out even more than I was before. My brother in law was almost arrested while he was visiting his mother in a nursing home for merely telling her to "be quiet" (or he may have told her to shut up I don't remember) because she was yelling at him first and causing a scene. Someone told the head nurse that my BIL had said that and the head nurse without knowing the whole situation or why he told her to be quiet called the police and they came and a whole bunch of stuff happened because of that and he hadn't even raised his voice at her. He was able to explain and didn't get arrested but the fact remains he didn't do anything worth having the police called and yet he was still nearly arrested over something that simple. I've told my mom to be quiet when she's getting out of control and when she's throwing fits. I've raised my voice a time or two to get her attention because she wasn't wanting to listen to what I've said but at no time to I abuse her or do anything that should cause me any problems with the law. Yet now I have to worry everyday all day and whenever I'm awake of getting into trouble because my mom says something that I'm telling her to be quiet or I'm raising my voice etc. I don't know if I can deal with this. From what I understand it wouldn't matter if someone else was taking care of her or not for the 164 hours a month either. If the caregiver tells the case manager that she's heard something she didn't like I could be in trouble. That means that I can't get anyone to come in to take care of my mom and I will have to quit the job taking care of her before we find the right nursing home and will have to settle for whatever we can get. There is no other choice. We just haven't found one we like yet. We haven't been able to find one close to us that has a good enough reputation not to have to worry about my mom all the time being in it. I don't understand why they have to sneek around to see what's going on. I just hate this so much!!! :hissy: Rylee

Rylee, Sadly this is true. When my Momma first showing signs of Alzhimers she was great at fabricating some outrageous stories. I mean really bad stuff like "my Dad raped her" and the crazy part of it was she seemed crediable. Needless to say my family lived in OMG fear of what is she going to say to the wrong person. It was very important for my dad to speak to a social worker and subsequently my brother and I did to attest that some of these outrageous allegations were not true. It is horrible feeling like you are being scrutinized and having to walk on eggshells. My mom also went through a horrible combative stage where she would strike anyone when she didn't get her way. I had security cameras installed so that I could monitor my parenst from my house( we live in a multifamily house) My friends would joke that i had more security than Macy's, but I was afraid that my mother would do something crazy. I wasn't bothered by any outside agencies because as I said we didn't qualify for anything and I was primary care giver so there wasn't anyone overseeing anything. These agencies take elderly abuse seriously so even if your BIL raised hs voice while his mother was in the home they leaglly must report it followed up with a police report. Can you imagine what it is like for these foster parents when the kids make lies up and they have to be investigated? I could never live like that. The stress alone would cause me to snap. Is there any way that you can get someone to at least assume half of your "job"? I know that you are concerned and not wanting your mom to have to pay out of pocket, but I learned quickly that my sanity and self preservation had to come before many things. It sounds like you need a break. For me I likened to a 200 lb rebellious toddler when my mother went through that stage. At least with a child you have some control. It is hard to care for a loved one and even harder if it is aparent because your basically switching roles. EZ

I can understand the need to keep a check on the elderly because there are a lot of people who abuse their parents but I guess with the good reports I've had with the physical therapy people that come in and see how I am with my mother. I guess I'm just so frustrated by the idea of surprise visits on top of everything else. I hate ANYONE to come without notice. It's just the way I've always been. I was like that as a kid. I didn't like people coming to see me without telling me first. I don't know why. Now not only is someone going to come check up on us but it's without notice and I can't relax and it makes me angry that I have to deal with that. With physical therapy coming in 4 times a week to work with my mom, if they seen something they didn't think was right they have the legal obligation to tell someone about it. But I always know when they're coming and that makes me more comfortable with the whole thing. I've only been given 10 minutes occasionally before they do get here. They call the day they are coming and I don't mind that because I know before they get here that they are coming. Even if it's only a 10 minute warning. It gives me enough time to get dressed if I'm still in my PJ's and it gives me enough time to pick up a few things that may be on the floor. I still don't like being under the microscope. I don't like the idea that I can't be myself and relax in my own home. It is just wrong! Rylee

Everything was fine until I was working from home but when I was offered job in a reputed company I could not reject it but my problem was my mom whose vision has faded and needs assistance all the time. Then one of my friend suggested about [URL="http://www.care.com/senior-care-p1006.html"]this[/URL] care provider and my problem was solved. Now its almost 8 months and my mom has never complained.

(((Rylee))) I know this is hard for you. I am not one that loves people just dropping in either. I am trying to get better about it, but I just like my privacy. They will most likely never make a surprise visit. They just want to add to the anxiety.

Last week I was at the VA hospital with my Dad. Yes the the caregiving daughter is still at work taking care of her father now. Anyhow I picked up this awesome magazine called Caring Today. All I can say is AWESOME! The website is caringtoday.com. I plan on subscribing to the magazine because it was everything an adult child care giver could relate to. There was even some humor in it too. I though of you all as I was reading some of the articles. EZ

Stuart, I almost fell over reading your post. My mum had a stroke three years ago and has had two more since. She cannot drive, & I take her to all of her appointments also. I am 21 and still live at home, but have become my mum's fulltime carer. She can feed, bathe & dress herself which is good, but she developed epilepsy as a result of the first stroke, so is very uncertain of going outside by herself, walking into the lounge, etc. She is alright when I'm with her, that's the thing. I feel so bad for complaining, because I wouldnt NOT look after my mum. In saying that, I;ve found recently that she seems to be guilting me into things. I had a lot of sickness in my childhood, & she says to me "I was there for you when YOU were sick!". Even when I wanted to go to Uni this year, she had a panic attack & said she couldnt cope without me, so I didn't go. I feel like a prisoner some days. I havent seen any of my friends for so long, & have only just started going out for coffee with a few of them, and even then only for half an hour at a time. Mum goes out, but she wont go without me. It's like three years ago, someone joined us at the hip. I feel like I'm going to be stuck here forever. I can't go to Uni, I can't get a job, god knows how I'm ever going to be able to move out. I hate myself for complaining like this, because as I said, I would never not look after my mum. Sometimes I feel like I just need a little space to breathe though.

emmacj, I am so sorry about your mother's stroke. But I have to say this is not fair to you. It is not fair to children that are still living at home or for those of us that have moved out. You need to find a way for someone to help you! Are you in the states or UK? You should not have to give up your life like you have to care for your mom. This is too much for anyone. Is your mom also the mother of your half siblings or are they still younger than you?? (edited***I just realized that they are not, sorry I missed the bottom part) Please come here and vent. That is why I started this thread. I hate the guilt trips and I really am trying to get over that guilt. PM me if you need to. Let's see if we can find you some help. I think you should be allowed to have your own life!!

Sstuart, I cried when I read your reply, it's good to know I'm not the only one feeling like this! I feel like I've let my mum down, because she's been so good to me when I was sick, now it's her turn all I seem to do is complain. I live in Australia. We've tried getting help through our local council, but the only help they'll give us is an hour & a half per fortnight where someone comes & cleans the house. They said they can't help any more because a) mum can dress herself independantly, etc, and b) mum is not a senior, she's only just turned 50. Mum won't go to any groups, all of the activities she used to do (scrapbooking) etc, she wont go to without me tagging along. I don't know what to do - she wont tell our extended family how sick she really is because she doesnt want to be portrayed as a 'sick person'. If I try and get help she'll think that she's a burden, which she's not.. I feel like whacking myself across the face for this, how terrible I must sound!!! Some daughter.. Thanks for your reply, it really did mean a lot to me. -Emma x

I am sorry that you can not find any help. I think I would ask for some help from family. You need to take care of yourself. This is not fair to you. You do NOT sound terrible-It sounds like you are overwhelmed and need some help. Other than being somewhat embarassed what is the worse thing that could happen to your mother if you told someone else that you need help? I think you need to do it. Unfortunately often the person who has had the stroke has a change in their personality and is more difficult to deal with. Please continue to come here and vent. I am in the US so I do not know what is available in Australia--I can always lend an ear without judgement!