Being a Caregiver
It's easy to focus on everyone and everything other than yourself. In this online support group, we focus on the "i" in Caring and your role as a caregiver -- offering tips, advice and support to help with self caring.
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A fellow caregiver said...
My Mom is in her 9th year with ALS. My lovely Sister cared for her for eight years at home while I assisted with finances. The "caring for" part was the hardest; financing seemed a lot easier. My Sister gave up so much to care for Mom that I feel a lot of guilt.
My family was able to keep her home for 8 years, but a few months' ago, she aspirated, and we made a decision to place her on a ventilator with a feeding tube. She is now laying on her back in a facility, waiting for us to visit. They allow her up on a scheduled day once a week for 30-60 minutes. Otherwise, she is lonely and in bed. She can't place a phone call or change the tv channel without help.
Mom's life has changed so much, and she is sad and lonely. I was recently laid off and try to visit once a day, but it really wears on me. She has two roommates -both in comas - and they never wake up. I honestly can't imagine being her and feel guilty in that we made the decision to extend her life. Mom was wide awake and alert when the decision to put her on a ventilator was made. I mean how do you just pull the tubes when she's still there and can acknowledge you? We didn't have much direction from the doctor; apparently, it's illegal to discuss end-of-life decisions.
Mom is so unhappy and just waits for us to visits; that’s all she has now. She is often angry and yells and says horrible things, which I understand. I'm so worn down and am not sure how to move forward as this is so horrific.
I have no one to speak with, as my friends are tired of hearing about this scary experience. I feel isolated and alone. My Sister is living with me and is angry as she now must adapt to a new lifestyle. I honestly, don't have much more to give.
about 2 months
I am 71 and the caregiver to my husband 74, he has mobility issues and does not get around much, I basically do everything for him, and assist him in bathing I had to get lifeline for him as if I go shopping he is alone, He has become so dependent on me ,he dosent want me to leave the house, he wants me to stay home with him 24/,7 which is unrealistic. how can I get him to see I need some alone time
My husband had acute respiratory failure and 2 intubations in May '18. I am seeing the effects of his oxygen deprivation daily. I don't know how to accept our new normal as I still don't know what it is. I feel I am becoming such an unhappy person and burden to my friends.
Hi. Carl here. First time poster. I'm not ashamed to say, I almost cried tonight reading all the stories from other caregivers. I see a little of myself in each one, and the realized that all of the things I've been feeling, and agonizing over, cursing myself about, and feeling bad about, are being experienced by others. Although I would not wish this on anyone, knowing there are others like me, who are going through the same things I am, is somehow comforting. So, thank you all for sharing your experiences. It helps more than just the poster. I look forward to reading your posts and comments.
I need to vent and know I am not alone or going crazy. I have quit my job to take care of my grandmother-in-law who is 92 with dementia and breast cancer. I have been cooped up in the house with her for the last 4 months. When I ask her to go for a drive with me or to go to look at the stores she just tells me no she'll be in the way. My middle daughter just left for college last month and luckily for us she is close enough that she could come home for the long weekend. What really bothered me was when it was time to move her to college nobody could come and sit with Nana for a few hours so that my husband and I could get our daughter situated at school. Everyone had an excuse. So we chanced it and left Nana home alone for 4 hours and called 1 time to check on her. We immediately got in the car and came home because she was upset. I didn't even have a chance to say good-bye to my daughter. But when my daughter came home this past weekend I thought we would have some time alone to hang out and talk. Boy was I wrong. Nana wanted to go everywhere we went and we told her we just wanted to go by ourselves but my husband would be there with her it got ugly. She threw things and told us maybe it would be better if she went to a nursing home sense she was in the way she even laid a guilt trip on my daughter and told her if she didn't get to go she would stop taking her medicine. I know she is old and sick but really who acts like this just because a mother and daughter want to spend time together. For the next 2 days if we went anywhere she got dressed and went with us. So once again no alone time. It was so bad we asked our daughter not to come home again until Thanksgiving day because we know her schedule will be jammed and I don't want to keep setting Nana off like this last time. I am really getting to the point that I need a break. I have asked my husband for little breaks here and there but between work and here he needs a break too. I guess it is just the dementia but we answer the same question 97 times a day. She always asks where the girls are. We tell her verbally, we have it written in her puzzle book, on the fridge, next to her chair, by the phone, we even have it taped to her bathroom mirror. I just don't know what else to do. I finally came a little unhinged today because when she said she might as well go to a nursing home I went to the back bedroom and got a suitcase for her and told I would help her pack if that's where she really wanted to go. She looked so shocked. She didn't say another word about it. She just sat down and ate her breakfast and then asked what we were going to do today. Ok I am done venting. Please tell me I am not alone in this battle. I know the person she is now is not the real Nana. I know the real Nana is in there somewhere but is being lost to this horrible disease. And I know she doesn't mean the things she says and does and that I shouldn't take it personal but there are days it's hard not to.
I’m a hard working woman living with two dysfunctional people. My adult daughter and recovering addict and my husband who has early dementia. I’m an author so I work out of my home and also have an online antique business. I work all the time. I’m miserable. I want to move but can’t because my daughter with us have a place to live. My husband needs a lot of care and has cognitive impairment. I honestly don’t know what to do. I know I should get out and join some groups but I work all the time so I don’t. Maybe I’m too depressed. I don’t like talking to my brother or my best friends because they don’t walk in my shoes but give a lot of advice. They say I’m an enabler, probably true. I’m a mess.
My MIL is in a wheelchair and has a driver who takes her around town 3 days per week. She manages the schedule directly with her driver who she found at the church group, but we get the bill and pay for the service. Recently she's been complaining that the driver sometimes misses her scheduled days and has also done so in the past months, for which we have already paid. My MIL uses a small flip phone just for calling her family and friends who are all on speed dial, it doesn't even have a camera so we can't even ask her to take a picture when she's out with the driver and send it to us. Should we ask the driver to do that? We don't want to sound like we are monitoring her work and definitely don't want her to stop providing her services since my MIL is dependent on them. Would appreciate any advice on this sensitive situation.
I have Durable Power of Att. Plus Advance Healthcare Directive. I was manGing my 86 year old mother’s medication. Then the Independsbt Care Home where she resides said they would do it for 250.00 a month. I agreed, which was a mistake, there have been many messups on her medication. The latest was she was given too many blood pressure pills. We were wondering why her blood pressure was way low. I went in today and they told me that they had made a mistake. The wellness nurse told my mothers doctor they want to handle the med management, so he told me for the time being he is having them do it! Don’t I have rights over this to do what is best for my mother?
I have been a live in certified caregiver to a patient with als, all by myself. I have had no time to myself, no sleep, up sometimes more than 24 hours, never could get out of the house! It has been everything for me not to end up in the crazy ward. I was the only one that took care of her, her home, her horse, her cat, groceries,spoke with her doctor,called in her rxs, and took care of the hard and pool. I also helped with the funding of food, yard, and pool. Well they have since put her in a home and boy have they changed! They are not going with the wishes of there mom, whom I may say is all there. I know her better than they do! I have one week to vacate and one month pay when my patient had said different. That being said, I know most of my rights, but not as far as what happens after I cared for her very well and had her doctor,homenurse, and hospice nurse say how amazing g her and her skin looked....
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