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My mother has been with me for nine months. She is alert and oriented. Her main problem is mobility issues. She needs assistance transferring from wheelchair to recliner/stairlift/toilet every time. Also assistance with all activities of daily living. One brother has taken her for short stays every three to four months. After she is taken care of and everything is placed at her fingertips, I try to run out to the store and get back before she needs anything. She feels if I can go out for a couple of hours-how much do I need? She can afford some extra help (at least for awhile). I am becoming more and more impatient . Tonight she cried after I told her after nine months I knew to leave Tylenol at her bedside. I have tried so hard to be there for her. She feels the monthly compensation should be enough. Is it wrong to ask for additional money for aides for time off each week?

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No not at all!!! You need time for you, and a couple of hours just doesn't cut it. Believe me. My mother moved in with us over a year ago. Last month we started taking mom to a respite care facility. It is beautiful, and she has her own room. She goes for 1 week per month. Last month was our first time, and quite a learning experience. We dropped her off yesterday, for our November week, and pick her up next Friday. She has her cell phone with her, I called her last night and she was fine. It is getting easier for both of us. I would have looked into home health care, but I want to be with my husband, alone, in our own home once in a while. Now when we go out, we don't feel like we have to rush back home. Tomorrow night I'm actually going to the Cyndi Lauper concert with one of my girlfriends from high school. If the money is there, it isn't wrong to ask to use it for aides or respite care. Think of what she would be spending if she were still living on her own. Let us know what you decide to do, you deserve some time off!!! 9 months is a long time, and if you plan on continuing to do this for however long you will need to think of yourself first...it took me a year to be able to do that. Mom moved in with us in Sept. 2012..it wasn't until Sept 2013 that she spent 4 nights with my 26 year old daughter. Then in Oct. we started the respite care, so this is mom's second little getaway. I'll admit, in Oct, after I dropped her off the first time, I was sick to my stomach. I got through it, I talked with her everyday on the phone, and we took a mini trip to Orlando, to go to Halloween Horror Nights at Universal. I've learned that I need to do some of the things I used to do, that I enjoy. GOOD LUCK!!!!
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You may be eligible for programs under the state you live in for care for her. There are waiver programs for the aging that will give you up to 30 hours of care per week by an aide. I am from the state of Pennsylvania and I administered the program through our office. The Area Agency on Aging provided the care. My suggestion is to call them and start. The majority of the public is not aware of these programs. This help provides much needed relief to the caregivers. Hope this helps.
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Of course not, money is to be used for ours and our loved ones well-being, stashing it away for a rainy day, well okay, we all need to try to anticipate emergencies, but guess what it is raining now. Use your mother's money for her care and well being. You can not take care of someone on your own, it just can not be done period. You will make yourself sick, ruin your health, ruin your marriage if you don't make sure that you are not over burdened.
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You hit a nerve, with your question. I am in a similar situation, but I don't have to ask about money. Mom does not question it. What she does question, is my going anywhere for more than an hour. We have been living together for over six years now, and I have less and less time to myself. I have not seen any of my friends in over a year. If I go away for more than an hour, she starts frantically calling me and everyone else on the phone. She is afraid to be left alone! I really have no answer for you other than of course you are entitled to compensation for your time. I just wish my mother would allow outside help. She won't!
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Dear 2TiredinFlorida, I am in the same boat you are in. My mother does not question the money either.....it's more of a case that she does not like strangers in the home...not even a housekeeper. I am caring for her on my own as I think you may be too...no help from immediate family, relatives or friends. I am so exhausted cooking what she wants 3X a day and waiting on her hand and foot that I am beginning to develop anger problems and my depression is getting worse. My mother screams my name over and over if I do not respond immediately. I am trying to go to a caregiver support group for 2 hours one time a month, but finding even that to be difficult. I pray all of the time that relief will come in some form or shape but to no avail. Take care friend and God bless you.
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Tell your Mom that any other job gives you 2 days to yourself - no one is expected to work 24/7 - that's so unrealistic and unfair of her to expect. Let her know that you NEED at least one full day per week (2 would be awesome) to yourself to do what you want without worrying about whether or not she will okay. Be sure you tell her WHY this time is important to you - that you NEED the breathing room - and in the end it will benefit her because you won't be so stressed out. I would start looking for someone and not give her the opportunity to say no.
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Call your local VNA and ask them to do an evaluation. Mom may not want strangers in the house, but my MIL was very accepting of the idea that she had her own personal RN visiting twice a week. They developed a good relationship, and MIL could vent to someone impartial.
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Dear Lady by the Gate: your mention of mobility/transfer issues caught my attention as that is my area of expertise. You didn't mention relative weights or how much lifting is involved but at some point the strain will catch up and an injury will occur. I would be glad to offer suggestions if you would like to get hold of me thru my profile. You are being a saint but even saints need some time off. My concern would be an eventual injury which could mean the end of the caregiving relationship.
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Respite is so much more important than money is to me right now. My Mother has plenty of $$$ but still believes it is the depression - her frugality is not going to change. However if I do not get the respite that I need to be a good caregiver then there is a problem. Just get someone to come in - as difficult as it will be in the beginning she will adjust - or perhaps you can learn to adjust to her behavior and just ignore it - either way you need time!! All of us do and I fight tooth and nail for it. It has caused some familial problems but I don't care at this point because I have to get away. You must feel the same thing - like if you don't get out of there you will suffocate.
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For all of you who say your parents won't allow help, get it anyway. I introduced it to her as a "companion" in the beginning. Every time I need someone and tell her, she says, "I'm not going to talk to her." I said fine. An hour later (with most, she is chatting with them). And sometimes I don't tell her, I just get someone and fly out the door! Until yesterday (when I got my hair cut/colored for probably the first time in a year), all my time has been devoted to her (doing grocery shopping, errands, etc.) OR in bed with a migraine (I have had chronic migraines for close to 10 years). Now I have hired Saturday help, that will be MY day! As long as I don't have a migraine, I'm going to do something FOR ME. I can't wait!
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You go LEP627- you deserve time for yourself also. It took me about a year to realize I had to take it - no one was going to offer it to me - and I have 2 siblings. When I had toddlers they would cling to me as I was leaving but when I got home they would be happily playing with the babysitter. Same thing here. I guess it is just human nature to use other people up especially when you are fading yourself. So we must take care of our own needs. For any family members that are lurking on this website because of guilt - help out your family members. It is uncomfortable to sit with someone who has lost interest in most things but I do it on a daily basis and need time off. So all you family members out there - help out more.
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Totally agree with LEP its not what they want its whats needed to care for them. Im very lucky as my mum accepts help we get 3 half hours a week she just cleans which is something.
Funny how the peole who say money isnt a problem seem to be the ones whose parents wont let any help in.
Oh get the help in whether they like it or not and take a break i think this is just nonsense. Can you imagaine a child saying no i dont want a babysitter?
If my mum could afford more help id get it asap and if she wasnt happy about that then shed have to go into a home. Why do some people think its ok to work 24/7 without a break because their parents dont want them to leave them alone and thats the bottom line.
My mum used to hurl abuse at me when i went away for one night but I never gave in i left whether she was happy or not I had no choice the more she realised she wasnt going to get HER WAY she calmed down and dosnt even comment now when i tell her im leaving.
For now she is ok one or two nights a week but this will change and soon she will not be able to be alone anymore.
the only way we can be carers for our parents is to get a break one week a month at least any more is a bonus!
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Something overlooked very often in caregiving situations is the fact that if you are exhausted, burned out, etc you will not be able to give good, quality care. If things are starting to get "frayed around the edges", it is definitely time to start looking for ways to ease the stress.

Also, you must remember that although she is your mother and told you what was good for you for most of your life, YOU are the one who gets to decide how this goes. If you feel you need respite, then take it.

Remember that just because you are a caregiver does not mean you need to ask permission to take care of yourself too.
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Difficult maybe but not unreasonable. Before my mom was removed from her home, even going to work was hard for me as she had little to no concept of time. When I went out even just to the store for an errand, she accused me of being gone for hours. When she was finally removed (because it was unsafe to leave her there), I didn't realize how burned out I was; in fact, I was pretty sick. We get vacation time at work - to refresh and gather strength. It sounds like a MUST for you - enjoy your day of rest. It's a necessity!
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