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Aunty had a third stroke about 3 weeks ago. She is still in the hospital and will be discharged in four days. It was a mini-stroke that was only picked up when my cousin the nurse noticed that Aunty's speech was slurred and she called the doctor. She was still recovering from the hip surgery. She was allowed to go to 11-year-old's graduation last week, and tomorrow is his big party that his parents are throwing for him to celebrate passing to middle school. Hospital is letting her go, but we have to bring her back by a certain time. She was unhappy about having to do therapy before leaving for the party but I said that at least they are letting her go, and she agreed. Now when she comes back home, everything starts all over again. ...the physical therapy, occupational therapy, and I think speech therapy and nursing services too.I was beginning to ease up on some of my caregiving duties, but now I have to increase too; I have to stay home to let the therapists and nurses in, take care of her, etc. I'm not sure about 11-year old's plans for the summer; i.e., his mom is looking into some camps for him but I don't know if I am involved in any of the babysitting, picking up/dropping off, etc. or watching his baby brother. , POA cousin is helping with transportation and running errands, so there is a sense of obligation there with the kids.I was planning on visiting my older sister who lives out of town this summer, but I guess that's out now. I also had a regular summer volunteer job at a day camp that I loved. ..can't do that either. I have to wait and see what happens with the therapists' schedules and work around them.

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I'm confused as to exactly what your question is and where you need advice? Can you clarify?
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I went thou visiting nurse pt ot rn and voice at home visits my self every day of the week makes mayhem in your life and the one there there to help but you can get fill in nursing set up and that will free you up but you have to talk to a ss worker at doctors and let them come in house regualy to sit with her that's what I was told so her comes more stranger but less work more time for you to rest
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Oh, Gospelgirl, I really do believe that every one of us asks ourselves this question.

I ask myself when my life will begin, but more earnestly, what will be left of me when this is over? As I am caregiving, I am getting older. I am getting stiff and sore and lame. So far, I am holding it together mentally but physically, I can feel myself getting older. So, if and when I am ever "free," what will I be able to enjoy of life? Travel? That would be nice but I am beginning to doubt it.

You need to find people to relieve you now!!!! I got my courage up this year and asked my husband's son to stay with him while I take my grandchildren on a trip. He was happy to do it. He is coming to PA from CA for one week. Isn't that nice? I am very grateful to him.

Does Auntie have relatives who can relieve you?
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Is a nursing home out of the question? Also, if she's not on Medicaid, look into it. Once approved, between Medicare and Medicaid the resources are staggering. You can get round the clock, 7 days a week aides if she fits the criteria. Stop sacrificing your life. You don't have to be there just to let people in. Set up a system where you know who's going to be there when and leave a key outside for those you trust. Last, step back a little. Sounds like everyone else is doing what they want. As long as you're there they won't bother. Stop being a martyr. Take that volunteer job! Just tell other family members you're gone. Let them pick up the slack.
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And seriously speak to your aunt about a nursing home. If she's on Medicaid it won't cost anything other than what they take out of her monthly income...social security. Or they may take nothing. Find a social worker at the hospital and talk to her/ him about help and possibilities. They're miracle workers.
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How old is Aunty? I totally agree with Salisbury. Get help NOW! Taking my mom in was the worst mistake I've ever made. I know you feel a responsibility to care for Aunty, but your first responsibility is your own health. I've figured that out after only 6 months of this living hell, and I'm taking steps to remedy my situation. I suggest you do the same. When I took my mom in, others told me it would drain the life right out of me, and that mom would probably outlive me because of it. I can now see that is happening. I'm not going to let that happen. It's not worth last third (or more) of my life to help with the poor quality last few years of someone else's. It's not selfish. It's self-preservation. You have to do what's best for your FIRST. You're no good to anyone if you're not good to yourself first.
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I was wondering how things were going with you now Gospelgirl. If you want your life back you will have to assert yourself and take it! I think you are now seeing the reality of some of the advice given in previous posts, Auntie's health will continue to decline and her needs will continue to increase. Unless you are willing to eventually become her hands on 24/7 caregiver you should begin to extract yourself from your family obligations NOW. The longer you delay, the more enmeshed you will become and the harder it will be to make the change.

As for the babysitting, it was disingenuous of the family to expect that Auntie was going to be able to handle that just as she always had done, they knew perfectly well in reality it was you doing the caregiving there, not Auntie. Just give them the dates you are going to be away and tell them to make other arrangements. There should be lots of high school age kids available who would like to pick up a few dollars this summer.
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You get your life back to yourself when you decide to get it back. No one is holding a gun to your head. If the duties you have already agreed to are too much for you, then tell people. Communicate your feelings to them. Have the POA cousin hire someone who can take over while you get respite. Everyone doing caregiving deserves a break. Sounds like you are at that point!
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Ferris is right. And, hey, get that POA to step up!!!!!!!!!!!!
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Ferris1 is correct. Get out and let the family take care of themselves.
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My son graduated college out of state in May and accepted a job in yet another state. I so wanted to help him move and help get his new apartment set up. It is so hard to leave my parents. I made many arrangements and lists and I went. Sis was great, she even sent me pix of her visits to parents to reassure me! Bless her heart. The minute I got away a lightness came over me that was heavenly. I realize now how important it is to take a break. It was hard work moving my son, but the change in routine for 4 days was like a tonic!
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You get yr life back when the person you are caring for dies. Until then you suffer, feel the life being sucked out of you, try to make the person you are caring for a priority while your life falls apart. Because while everyone says get a social worker or community assistance all of those agencies eventually go away and you are once again stuck caring and caring and wishing for your life. Trust me.. I'm living it solo. No one really helps you
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I agree with everyone that tells you to TELL people what exactly you are needing. And thank goodness you have people to help with transportation and other things. I'm by myself AND take care of 2 small grandkids when they are sick or out of school. My mom and dad have no one else and it is draining and seems to be never ending. At least my mom is in a facility where she is being taken care of but I still must make decisions, go and check in on her to make sure she IS being taken care of and do all sorts of paper work. With dad, well, the list is too long. My husband just retired and we had big plans years ago before all this started. It's hard to go places when I do get to get away. I worry constantly and last trip to some relatives he got very sick so I had to come home. Like I said....it's hard and frustrating but I have gotten close to my dad and would do it again. Maybe do some things a little differently but all in all I've done my best and he loves me for it. Last thing though, again, TELL people you need a break, make plans and TELL them when you will be going and when you will be back, period. Let them figure it out. I didn't do that when my sister was alive and THAT is something I would definitely do differently. Good Luck and God Bless
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Have you looked into home hospice? We are just signing up and Medicare pays for all. Check out http://www.Aseracare.com to see if it available in your area. I did not know it existed and I am more hopeful tat some of the caregiving stress will lessen with their services. My MIL has dementia and my days are not my own. My blood pressure is out of wack and my Dr is adding medicine for blood pressure and anxiety. My health is suffering so I am hoping this helps
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Does she have any kids? Not sure why you've become primary caregiver because it's forever life changing and life robbing. I too have been caring for my mother for almost 12 years. I've put a lock box outside the door and PT and OT have the combination to get in so I don't have to be there more than I already am. Being an only child, I have no one who can help but as a niece, there must be others who can step up. The bottom line is this: what will be easier to live with in the long run, caregiving now (incredibly difficult as it is) or placing her in a skilled facility and potentially living with guilt for the rest of your life. And for those of you who say guilt is self inflicted, you're absolutely right. Aren't most things in our lives self inflicted? Sending you strength and peace. You're not alone. Many of us are sacrificing what's left of our "declining years" with no visible light at the end of the tunnel. I'm assuming you have parents that you may eventually have caregiving responsibilities for. Save your strength, you're going to need it. Hand this baton to someone else.
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2burntout....both of her sons died in their 30's; both from drug-related issues. .I moved in with her about 8 years ago because of personal problems too complicated to go into now.Both of my parents died when I was young; mom at 6 and dad at 17; grandma raised me and 2 of my 8 siblings (there are 4 of us surviving now).Aunty was like a "second mom"; she babysat me and did things for me when grandma was busy or working.
So as an adult, I have been sort of like an only child.
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F erris1 and Salisbury. ..I was trying to wait until POA cousin recovered from her minor surgery procedure before asking for her help; she is better now and almost back to normal, so she will be more available to help me out. I was just frustrated with the fact that just as things seemed to be easing up for me, she got sicker and everything starts all over again.Ready2Go...Aunty is 76 .
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At 85K a year for a nursing home, I don't consider taking Mom in a mistake though it is the hardest thing I have ever done. I have had to come to terms that my life is just different, restricted. I do what I can and hope someday to be able to travel or come and go as I want again. There are many times, like Salisbury, where I wonder if that will ever happen.
I have found taking it one day at a time is the best way to deal with this. I have no family to come and relieve me either. Lately for some reason, after dealing with tons of hospita peoplel, nursing home rehab and lazy aides, and pushy physical therapists for the past year etc etc, I don't mind being housebound with just a nurse and health aide to help me a couple days a week. It is the push to cure a person that just isn't getting better that is the worst time of it all.
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you fon't get your life back..maybe when they die..I've hone through three yesrs of my husband w vascular dementia..uncontrolled diabetes.. in 2 nursing homes
now working on the third no money in the bnk.NH rerouted
his ss check to Their acct..i am left only w my ss
it s==×€&)₩#$ now i know why spouses commit suicide
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Amen Readytogo I agreed. It doesn't worth hurting yoyourself when there are other possibilities. Yourself comes first and It is not selfish doing. We have to be able and capable physically, mentally and emotionally to take on such drainful responsibility. Gospelgirl you need to seek help from other relatives because such responsibility would reck your nerve
then both you and your aunt would need caregivers. Sometimes we want to help our love ones, we love them that much that we don't even see ourselves diminishing slowly until we drop.
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I think that a workable analogy for our lives as caregivers is - it is similar to being in jail or a POW in war -we have lost our freedom and it feels like we have lost our lives. The people we care for drain us emotionally.

I look at it like I am in jail, and I don't know when I will get out - but I WILL - when my loved one goes to heaven. So I look forward to my freedom some day, and I try to prepare for it. I exercise, eat right, stay healthy, and I am working on preparing for a new career that will be only possible when my Mother is gone.

In the meantime, I do the best I can. I take time out for myself, I am honest with myself and my Mom. I draw boundaries. I just keep on keeping on. Someday I will be free again, and in the meantime, I chose to do this so I must take responsibility for the situation I find myself in. I do what I can to improve it, and I ignore or down play what I cannot change. Accept what I cannot change, as the serenity prayer says.
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Who is living your life for you? Is it best for you to have the total responsibility for both and leave yourself in most likely an unhealthy situation? The caregiver frequently dies first if they don't take care of themselves and does too much for those that need 24/7 care which would best be done by others.
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If ur Aunt was living alone there would be no one to let the therapist in. They are used to just walking into homes. Why can't u ask for rehab. I don't think u should give up anything. Ask for help. And the 11 yr old is his mothers responsibilty. Explain u can't do it all, she is just going to have to find someone else.
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I feel just as HomewithDad does and have had to adjust my expectations of life for now.At first that is really hard, giving up life as you know it and freedom. Meanwhile I am doing what I can with what I have to get ready when the change comes, and I am told that once it does it all happens fast. I want to be in good condition and ready for all that. I tell myself daily not to panic, keep calm and stay the course. Day at a time.
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Home with Dad, the word is "chose" is the word. Not all have chosen what they are doing, it just fell in their laps. Its not so much being the caregiver for some, its that the other siblings don't pitch in with the care. I'm only 7 months into this. My Mom is basically easy. I pay an aide to bathe her 3x a week. Big help. I have a brother 1/2 hour away another six hours away. In the long run it would be nice if the close one volunteered to sit with Mom for a day. The other brother, take one of his vacation weeks and come and take care of Mom at my house so we can get away. I know this will never happen. You seem to have all our ducks in a row. You seem to have found that happy medium for now.
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JoAnn29, I agree with you! This situation "fell" into my lap, too. No one else helps out except for my cousin (POA).I became the de facto caregiver because I am living with her and no one else has the time ( or so they say) because of kids, spouses, careers (all the things that I DON'T have right now. Katie 222 and HomewithDad...I love your positive attitude. I will try to hang in there and do my best, as I will be needing to look at the big picture and the bright side. She is one of the last connections I have to my late mom.

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Gospelgirl223, I had no help either. So I ended up putting Mom in a nursing home. Being the primary caregiver does not end there. If it's only you, you will still find yourself spending a lot of your free time there- literally or figuratively. Literally, you will actually be there to keep an eye on the staff ( possible elder neglect, bed sores, lazy staff, etc.). Or Figuratively, your worries and concerns will not stop just because you are not there. Your mind will be there....even when you are not. Find someone to rotate EVERYTHING with you for whichever choice you make. It will definitely be a big help and gives you SOME of your life back.
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If it helps at all, thousands of us ask ourselves the same thing everyday: "when will we get our lives back?". I love my mom and want her happy and well cared for but that doesn't mean I'm not resentful. My years are slipping away. I take her out everyday (or she starts to freak out in the house), I catch myself looking at others around us. I rarely, if ever see anyone with their elderly parent/s. Instead, I get a glimpse of friends laughing together or someone who is casually enjoying free time alone. In the meantime, I'm getting the walker out, scrambling to get a few things before I see my mother waiting for me at the front of the store. Sometimes we have to leave immediately because she's having a panic attack, till we get back to the car and then she wants to go to Tim Horton's. This is a good day. I know some of you have it much worse than I do and yes there's a lesson in all this....I think as caregivers, we will make the best elders. No one will have to make difficult decisions for me. They're already made and when I am no longer able to care for myself, I will not expect someone to give up their lives for me. I want them to live, to love and to experience all that life has to offer as long as they can and their time comes, pay it forward. This is the gift of love that I will give my daughter and grandchildren if I have a breath left to speak with.
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Gospelgirl 223 - When my husband of 33 years filed for divorce and married another woman very quickly, I decided that the best thing to have in a bad situation was a good attitude. I had to move home with my 86 year old parents because I could not make enough $$ to support myself, JoAnn29, I say that I "chose" to live with and care for my parents because the choice of living with no money on some one's charity while my father was so frail that one fall would (and did) end his life, and my Mother is so dependent that she HATES to be alone. Yes, it was my choice. I could have chosen to go live with one of my newly married children and ruined their family lives but I chose not to.

Katie222, we all feel at times- sometimes all the time - like we have lost our lives and WHAT ARE WE DOING? AAGGHHH!!!

I do not have all my ducks in a row, they are all over the pond and for months I was drowning in the middle of the pond. But I have learned to tread water, to laugh at the ducks of my life bobbing and eddying all over the place. SOME DAY I will be free again. My Mom is 91. I am 67, but in very good health so far. I don't know what the future holds, but for the present, with God's help, I will do the best I can and hope for the best. Someone once said all you need to be happy is "someone to love", "something to do" and "something to look forward to." I love my friends, I am doing something to prepare for my eventual freedom, and I am sooo looking forward to that day when I "Get Out Of Jail Free"!!!!
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This is for Gospelgirl: regarding the door keys -- there are such items as programmable doorknobs for $70 to $200 available online or at home improvement stores. Kind of pricey, I know, but if you start having a lot of people coming in, it's comforting to know you can give each person a different code and change or delete their codes if there's a problem. You are doing a wonderful thing for your Auntie. I have found with my mother, she does not mind my delegation of duties to other people, as long as someone kind is there. Even though some of them are untrained "companions", I ask if they would mind wearing scrubs, because my mother seems to be reassured by that visual. Also, she is more compliant with scrub-wearers' directions. Definitely grab your opportunities as they present themselves and don't feel guilty! My personal feeling is that if more people took a turn at caregiving, it would improve empathy across the board and reduce our feelings of isolation!
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