Seasoned caregiver to my mom; 1st time trying the online-thing; needed to vent...

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I came to upstate NY last Oct from FL to help my 2 sisters care for our mom, who is 83; I'm single, 57, & have 2 grown kids in FL; I left my lower-paying p/t job as a Pharmacy Tech, but I am also on SSD; 1 sister lives & works in CT-(higher paying job, & family); 1 lives here-(divorced, & 2 girls in their 20's, in dif states)-so, I 'volunteered' to stay. Winter was mild, but I hate it; I made it thru by keeping up w/ mom's app'ts, cooking, eating, reading, sleeping-I'm an 'outdoor' person-THIS sucks!! I've been scheduling & taking mom to all her appt's; while trying to keep up w/ all my own finances, ect. I need meds now too, but my Dr in FL won't call them in up here-(2 are controls)-so I need to pay out of pocket to see an MD here; also, need to see an Optometrist, so I can get a new RX for my contact lenses. I continue to maintain my apt in FL, as I do NOT want to give up whatever little bit I DO have for myself!! Mom owns a home here, & is divorced; gets around pretty well now; but does NOT want to move to FL-(too hot); or CT-(my sister's too busy); OR Assisted Living, as she will havto spend down the little she does have saved, then apply for Medicaid; AND, "they take ALL your SS check & leave you broke!!" Mom was always more of a 'loner'-(her best friend of 50-yrs. passed away over a year ago); she never mingled w/ people-no clubs, exercise, sports, travel, ect; therefore, VERY tuf for me to get her involved in anything other than her daily medical appt's... Mom has MDS-(blood cancer); chronic a-Fib; stroke in 2012-(she lost peripheral vision in left eye); several small TIA's since; HBP; sleep apnea; anxiety, depression; tinnitus; delirium-(which she was in the hospital & brought me here, for); & other minor ailments. She's on SO many dif meds now, which I manage, but we never had that to deal with prior to this, either. My sister who lives here handles most of mom's finances-(including applying for her grants for cancer meds, Dr's, Ins, ect); while I keep all her appt's & handle her everyday finances, shopping, ect. We don't want her to drive-(she had many 'minor' scrapes to her vehicle prior to my coming here, so due to her current medical conditions, meds, ect-we've been able to get the Dr's to agree, as well); but after a blood transfusion, when she has a bit more energy, she wants to drive, go downstairs to the basement, cook & shower on her own-she stil needs 'supervision' for these things-therefore, I KNOW that she may try doing something while I'm out! Becuz of the tiredness due to the MDS & chronic a-Fib, she sleeps a lot, & has a hard time getting up 'early' in the morning; so all her appt's are after 1pm. Since all the Adult Day Programs here end betwn 3 & 4pm, I haven't been able to get her into any of them; she doesn't want to pay to have someone come & stay w/ her for a few hrs, so that 'I' can get out & away-(& 'I' certainly can't afford it!); however, my sisters & I do NOT want her to be here alone, as long as she has enuf 'energy' to try & do things on her own!! Mom's a good person & our family gets along well; she's not lazy or overweight, nor demanding; she dozn't have a lot of money or power; she's quite humble-she just wants to 'feel-well' again, have her 'independence' back, & be able to help others-oh, & she likes to talk-alot-& about politics, & I've had about all I can take of that!! Fast forward to where we are today-I want & need to get back to MY life in FL, so now, I am trying to find alternatives to my staying here-which will be for mom to move out of state w/ me or my sister, into Assisted-living, OR pay for home-care-ugghhh... I've started power-walking & listening to MY tunes on my iPod again over the weekend, as the weather finally changed-(mom likes musicals)! I'm going to buy a small set of hand-weights, also-(I was into sports, working out, the beach, ect, back home, but have not done ANY thing since coming here)-I'm craving my 'routine' again! Sooo-that's my story-vent/rant over. I don't expect any responses/comments, bcuz as I 1st said, I just needed to vent, & I wanted a specific place to do it. And, if anyone does-then, thanks for reading! :-)


You will never get your life back if you move your mom in with you. Think really hard about this. Please start looking for assisted living for her. Please read the posts on here .Your mother is already changing your life with her continued medical needs. These will only increase as time goes on. Unless you want to become a prisoner in your home don't move her in. You and your sisters really need to get together a game plan buy don't move mom in. So many people start of with good intentions but are not prepared for some to the things they may have to do, like bath their mom. ,clean her behind because she can't , clean up urine and feces. put diapers on her ,please ,please, read the posts on here and ask questions but for the love of God don't move her in.
franny, it sounds like you and your family have the care thing handled better than I do. It does affect your life. You begin living life for the both of you. As her needs increase, your own life gets smaller and smaller. Pretty soon you start to wonder if you'll ever get it back.

Your mother has made big demands in a passive way. She won't move to FL or DE or go to assisted living. That means someone has to come in to her home and help her. Right now that someone is you. You have to decide if you can continue to do it or if your mother needs to rely on someone else. If you move her in with you in FL, things won't really change. Only the address will be different. She will still require around-the-clock supervision if you worry she will do things to get in trouble.

The only thing I can think of is something that we all need to do -- decide just how much we can do and how much we can give. It does not sound like you are financially able to donate all your time to your mother. How would you pay your own bills or save for retirement. It also sounds like you are not psychologically able to deal with the home-bound lifestyle that often goes with caregiving. It gets more constricted, instead of better.

Your family gets along well, so maybe you can sit down and make a plan that you can all live with. Perhaps you can all do things for her for a while and plan for the time when you can't.

Really, to me it sounds like you are doing a super job. You just need to get some of your life back. I understand that completely. I've given up finding my own life now after a few years, and it's not a good thing for me.
franny221, welcome to the forum. I grew up in Syracuse and there are so many wonderful lakes and parks in the area, I hope you can finally get a chance to enjoy them. Such as Green Lakes with a very nice hiking trail around the lake. Has your Mom always lived in upstate New York? Winters can be crazy there.

Now as for Assisted Living, it all depends on New York State Medicaid if they give waivers to help pay for some of the Assisted Living cost. Otherwise, Medicaid would be used only for a nursing home, and it doesn't sound like your Mom is at that point.

I would suggest Mom look for senior apartments where the rents are based on one's income. And if there is any money left over, have a caregiver come in in the mornings to get your Mom up and ready for the day, like helping her with the shower, help fix her breakfast, do a load of laundry. I don't know if such apartments exist in Syracuse so call the Onondaga County agency on aging to see what is available.
Well so far, your mom is calling all of the shots. That's fine, if she's not impacting your life, but she is - in a big way. When my folks lived 2.5 hours away from me and I'd get emergency phone calls to come help, I'd have to leave my job and rush down to them. After about three years of that, I finally told them the stress was killing me and things needed to change. So my folks moved up near me - not in with me. My life got much better in some ways and worse in others. Fourteen years later, I still have my mom to caregive for. She's now 96. I am willing to do it because she's very grateful and pretty easy to deal with - unless she gets stubborn like your mom.

But I've gotten to a point where I impose my will when it's in her best interest - like getting people in 2X a day to give her meds because she was forgetting to take them and she wound up in the ER.

Your mom is choosing to be a loner and has most of her life. So don't add a burden of guilt to yourself because she's not socializing. That's her choice. My mom doesn't want to socialize either. Once in a while I worry (because I'm really her only human contact) but then I realize she can leave her apt and go downstairs and be around other people any time she chooses.

So I guess I'm saying your mom has to bear her responsibility in how her life is going and what she can do to make it better. You don't have to be the one to make all of the compromises. That's not fair to you. So go back to FL and let mom decide what she wants to do. She has other options that don't involve you giving up your life in total servitude to her.
I have found that caregiving is just like words once you commit it is very difficult to take it back if ever
I just logged on here real quick tonite, & wanted to say "thank you" to everyone for your input-I can really relate, & it's a GOOD feeling! I'm a bit wiped out, as I didn't sleep well last nite due to migraine, & took mom for a transfuse @ 9am-long day... I'll be on here again soon to respond-thanks again!

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