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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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Gospelgirl, I hope you find a good PT for your Aunt. We seem to have to weed through a lot of bad ones before a good one is found. I hope you get the same people that you liked which you had before!
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Katie 222: My aunt had to fire 2 of her old physical therapists; one was lazy and spent most of the time on his cell phone and computer, then with 15 minutes left in the hour, he would start working with her. His replacement was worse: she looked old enough to need therapy herself. She told us that our couch was too soft-she needed a hard dining room chair to sit on. When teaching my aunt to walk upstairs, she could barely walk up the first two without struggling to hold Aunty upright. Aunty called the agency and they are going to send another therapist; one she had before last year after her first stroke. She didn't really like him either but she said she's willing to give him another chance because he seems pretty experienced. We are also waiting for an OT to be assigned; we hope to get the same one as well.
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Hospice has been a God send. Though I have not gotten my life back, I feel better now that they are here. The worst part of things was before hospice when doctors and physical therapists kept trying to rehab my Mom...it just wasn't happening and they would turn to me like I was doing something wrong or like they had the attitude of "I am glad it isn't ME".
I had physical therapists coming to the house ordering this and that device and running up bills, and then they would brag about their vacations etc. knowing full well I could not leave as my Mom is bedridden and has multiple other health problems. I had one physical therapist that wouldn't think before opening her mouth and she was a lazy person complaining about her job, etc. Once when my Mom mentioned the Queen of England in conversation, this slob of a PT said "Oh yes the Queen...she is an old hag too..." Too?? An old hag in addition to whom?? My Mom??? She also questioned my Mom's eligibility to her benefits. I had her fired!! This sorry excuse for a human should not be working with people. This is just some of the s*&&$ I had to put up with when we were in "rehab" mode. I could fill volumes with other stories of incompetent fools
The hospice people have been understanding and caring and it is a world of difference from when we were in rehab mode. The hospice people actually care about me too and ask if there is anything more they can do to help. I tell them I am ok, but just knowing that someone understands the situation is great and such a relief. Hospice has taken so much pressure off, though it still isn't easy by any means.
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My Dad was on hospice for a short time and when he refused the pacemaker surgery. They only came once a week to check his vitals.. and when his heart rate became more stable they stopped coming at all. For me, it was more trouble to sign up for hospice then it was worth... Of course it might have been different if his health had taken a turn for the worse and he actually was close to dying. The main reason we had hospice was that in the event he did die or took a sudden turn for the worse, we would be able to call them for support.
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Gospelgirl I agree that you need to get out of that toxic situation or at least get help or more support. Can you go to a counsellor or staff member of your church and tell them how depressed you are?
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Hospice is supposed to be for those who are dying, but we are all in some way dying, or at least we all will die. You should use whatever helps you most. There are no hard and fast rules. We had my Dad at home with Home Health Care and we should have switched to Hospice as they would have come more often and might have given him the pain meds he needed. Our professional caregivers kept telling us that he was not ready for hospice but they were wrong. One morning right after we prayed for him around his bed, he took a deep breath and left this earth.
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Ggirl.....Hospice is for those that are not thriving anymore. I had a friend that went off and on of hospice for years from her cancer. My mom has a hospice nurse and an aide. She has dementia/alz. and has started not eating and losing weight. Good luck with your aunt. My mom went through the same thing taking care of her aunt. She could not do anything right but it was my aunts brain speaking. Didn't make it any easier to hear all the time but at least she could put it in perspective.....sort of. Good Luck and God Bless
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Gospelgirl, I have been following your story. You need to get out of there! You are in an abusive situation and they seem to be trying to hold you down. Cooking should not be stopping you.. lots of people don't know how to cook or aren't good at cooking. Get takeout if you have to .. but follow through and break free of this!

Don't let them hold you back like this. Aren't you already paying for half of the expenses?
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(Posted too fast again).She acts like she doesn't want me around and I am going through a severe depression now.I don't know what to say to her. When she says something that I don't know how to respond, she will complain that I "don't know how to talk like an adult".My response is that whatever I say is always wrong, so why even bother answering. I have no sense of respect. I told her that I wanted to move out; she says I can't function on my own (her main point being that my cooking skills are too bad; she keeps referring back to the 90s when I had a few problems in my old apartment. )
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HwD...I thought Hospice care was for patients who had terminal or fatal diseases. She is not in that category. BTW. ..evidently I'm not that devoted ..We had a huge argument yesterday where she accused me of having an attitude problem, of breaking several household things while she was gone, and just being incompetent my whole life (she dug up darn near every major mistake since birth).
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Gospelgirl, I hope you get some help soon. You sound like a devoted caregiver, and you are doing an amazing job! Would you get more help from Hospice than from Home Health?
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See if u can get an aide if she needs help bathing. Will only be until they discharge her but will giv u a breather. I took advantage of it.
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HomewithDad. ...My aunt came home about 5 days ago. ..I don't have any more help yet. Aunty is going to get PT, OT, and Speech therapy. The PT has been here once and also a nurse is coming weekly to check her blood pressure and overall health. We are waiting for speech and OT to set up their time.
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GospelGirl, are things getting better? Do you have more help? How is your Aunt lately?
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I just read all the comments and really identify with everyone. This could be my life too. I don't remember who said I've lost my health my vitality my beauty and I am only 56, but that is the way I feel as well and I am only 50! I think all the advice is good get as much help as you can. My sister took my dad for the last 3 days, she says it is 5 days but I took him there on Thursday which required packing the car with all his assorted necessary equipment and driving him two and a half hours to her house and then driving myself back to my house so I could go to work the next day. I have worked the last 3 days and then she is bringing him home tomorrow but still I had the evenings free and it was a nice break. We have a Medicaid visit on Tuesday and hopefully will at least get home health in to help. my sister reports that my dad is doing things for himself at her house and walking around without his rollator so I guess he's got my number and I will have to be more observant when he is back here with me and maybe make him do a little bit more for himself. He is just not a nice person to live with so I really don't want him back. I feel your pain but as other said go on that trip do your volunteer job because it will make you feel like you have a life
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Look up Aging Care Village or Beacon Hill Village or Capital Hill Village on the INternet. These people organized their neighborhoods into communities to support elderly who want to stay in their homes the rest of their lives. There are instructions on How To Start a Village, etc. They went door to door and found friendly neighbors and volunteers and every day people who agreed to help. This is worth looking into. I just spent a lot of time with a woman who is trying to start one in Cheverly Maryland. Worth looking into. Some are 501 (c) (3)corporations, some just loosely organized groups of people. Could be the answer for some who feel isolated and desperate.
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Nomisk, if you are not enjoying any aspect of the job of caregiving, then perhaps it would be better for her too, if you "created a void" by removing yourself, that could then be filled by others, or services. Do you really want to stay or go? If you want to go, but don't know how, ask and you'll get lots of answers here.If you want to stay but need more freedom, there may be ways to do that too. Whatever it is, don't just let things be ongoing, but seek improvement, for you and her both.
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Nomisk, "the years add up" -- I understand, me too. when I would say, "I help my mother" and people would ask how long have I been doing that...I was embarrassed to have to say...really...15 years. Embarrassed because it is a job with no upward mobility, no promotions, no wages let alone wage increases! and no respect given us. We need a Caregivers Association. A Lobby and Advocacy group. It's a job where "success" is hard to define. When I was the most successful at caregiving, I accomplished improving my mother's quality of life. At the same time declining mine!
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I moved home to help my wheelchair bound mother 15 years ago. She is a paraplegic, due to a car wreck in 1972. I never imagined that I would still be here 15 years later. As the years add up, she becomes more controlling and manipulating. I thought we would grow closer, but that is not true. As she ages, my responsibilities grow. Just wish I knew when I will be free.
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Gospell Girl and Katy 222 when your "loved one" is gone, you can come visit me and enjoy yourselves, if you like to travel. This trial will not last forever. Keep your head up, as the teenagers I work with tell each other. You will find the answers you need. Keep seeking. Keep asking. Never give up. You can do this.
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Goseplgirl, they are "too busy" BECAUSE they can fall back on you. They know a doormat when they see one, and they are all too happy to step all over it.
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I think if my Mom passes away I will spend several days sleeping first...take the phone off the hook at some point after the necessary things are taken care of. No one calls me now, so why should I let them harass me later when I need to rest from all I have been through!
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Thank you, Salisbury, always hoping for the best.
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Home with dad, that was great, thank you, and good luck!
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Gospelgirl, why isn't she being discharged to rehab? That is the best place for her to get the intensive therapy she needs at this point. Insist on it.
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Now that my caregiving ended two days ago, when my Mother passed away at 88, I will get the chance to find out what is left of me. I understand how you feel. Caregiving took my youth, my beauty, my vitality, my health, and my most productive years. I am 56 and feel 70. I am taking extended leave from my part-time job, to try to rebuild my health and get fit again. Maybe I'll get prettier too, with better sleep! For you - ask "if I wasn't in this picture, what would happen?" I know for myself, I loved to be needed, so I thought of myself as indispensable, that only I could do the task properly or at all. But the truth is, no one is indispensable. When one person steps back, there is a void left, and nature fills a void -- and that moment of discomfort is necessary for someone to fill in, and sometimes they do just as well.
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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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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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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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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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