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I am the primary caregiver and day after day my Mom seems to be getting worse and worse in terms of not communicating what she needs. I am physically and mentally tired. I have come to terms that I may lose her soon... I think. I ask God all the time that if he needs to take her, HE should do so but HE should stop the suffering. I feel bad I can't do anything about it and I feel guilty that it just might be easier if she didn't have any pain and all was back to normal or that she leaves us. Even saying this I think I am a horrible person for even thinking about it. I have 6 siblings and no one seems to understand what I'm going through as not of them are here 24/7 as I am. They keep telling me "I work all day", "I have my own issues", "I need to care for my family" and when they do help and let me get out of the house for a couple of hours, they make it sound like they are doing me a favor. Isn't SHE their mother as well? Why shouldn't I expect them to help? Why should I expect them to understand? Am I wrong? Those that live out of the city come here and start telling me I should do this or do that and then after 3 or 3 days they go away... so who are they to tell me what to do. All I'm trying to follow is what the Hospice people tell me to do. Can anyone relate. I can't even vent with friends because I am always the one that listens to their problems, so I vent a little and the conversation turns to their "love problems" or whatever else is going on in their lives right now. Is it wrong to let them know that right now I feel it's my time for them to listen to me and be there for me as I've always been there for me? I have so many questions and other times I just feel like "everyone just leave me alone with Mom and I'll handle it on my own". So what do I do? Thanks for listening (reading).

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Hispagirl, my friends and family are the same way. Very self-centered. No one but them counts. A little secret, your life IS just as important as every one elses. No more, no less. I found some solace talking to a pastor from a church. I have nothing to do with my family now. I wish you peace and you are doing such a marvelous thing by caring for your mom but you need to care for yourself, too. Have you called Hospice? They can do an evaluation on your mom and possibly help out.
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Oh boy I can so relate. Feeling like you are all in it alone? My family are very supportive of everything I do for mom. But to take the time and let me have some "me time" is asking way too much for them. I know my other sister works but she does get a day off every now and again. And every time ...she is spending it at the local mall...not far from us. She comes and pops in stays maybe a 1/2 hour. But when it comes to doing anything for mom. She calls on me.
I also have an older sister that comes for a visit and sleeps on the couch next to moms room.. but will call me down in the middle of the night to help mom into the bathroom. I struggled and learned everything on my own. Why is it so hard for them to pitch in? They will always have input on what to do ..but they are not the ones here 24/7 doing it. I know one thing for sure. No one can understand what it's like until they live it.
At least you have Hospice too..I swear they are my angels. If they weren't here I would be hanging by a thread. Talk to them too..they listen to me whenever I have concerns. Call them at any time. Thats what they are there for. But you are on the right track with this forum. I have gotten so much good advice and encouragement here. I'm listening...and I know that there are a lot of us on here that will be here for you whenever. Day or night.
Here at least you don't feel alone. We all are dealing with the same as you...and when you need to release your frustrations you can do it here.
This is the hardest thing I have ever done in my life. And Kudos to you for being there for her. At least you know that you have done everything you can to give her the comfort and care she deserves. God Bless.
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hispagirl, I bet many of the people who become caregivers are the type of people who tend to listen to others, instead of talking about themselves. Probably many caregivers feel awkward talking about the problems they are having. That is why groups like this are so important IMO. It gives us a chance to talk about our problems.

Many of the people here have family that won't help for one reason or another. They have jobs or family that take all their time. They aren't good with things like caregiving. They figure we have everything covered and don't need help. And my favorite is that they are in total denial about how bad things really are. The denial is pretty handy, because it excuses a family member from feeling they need to spend more time with their loved one. Consequently, many of our family members don't show up until their loved one is in the hospital. Others don't come until the funeral.

I could go on about family, but it doesn't bother me anymore. I just accept it. At least I can be sure they will be at my mother's funeral.
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I want to thank everyone who has responded to my "venting". I do agree that some family members are better off not coming at all. In my case, I don't necessarily think, at least 4 out of 7, they don't care or don't want to help, but simply they are just ignorant or naive about what's really going on. Today, I feel that I will continue to do what I feel is right for her. Tomorrow I may feel different. I do thank Hospice for their help, but as all as caregivers, I do believe that no one takes best care of their loved one than ourselves. I have a friend that said to me "I'm so sorry about your Mother, but you must take care of you." I don't believe she said this to be selfish, but that if we don't take care of ourselves then we are useless and can't take care of our sick loved ones.

I'm happy to have found this forum and I hope that no one minds, but I may just use it as my daily diary. Does anyone know of a place in Florida (Broward County) that could possibly have some "sanity" help for caregivers at no to low cost. Like many of you, the only income that's coming in is my Mother's SS because I lost my job after 15 years and of course, I cannot work as I need to care for her. If you know or hear anything, please let me know. Thanks. I was wondering, perhaps even this site might or possibly should have a section that we can give each other time off if living in the same area. What do you all think?
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There is no guilt in frustration...it's a natural reaction to an impossible situation. In some ways I'm lucky, because I have no other family who should take over and give me a break, I know that I'm it and I have to always be up to the challenges. My heart goes out to all of you, though..because if you have siblings, you should have help. I had an aunt who used to give me one day a week off, but she became ill and passed away suddenly. I miss her...not only for her help, but because she seemed to realize the pressures that I was under. Sometimes, just acknowledgment of our situation is enough to make a difference. Caregiving is not an easy road..it's limiting, and it's tiring and it steals hours, days and sometimes years of one's life. I have been taking care of my mother for 8 1/2 years...since she had a stroke. I've had to quit work...which means that my own retirement years will not be as easy as there will be a lot less income, and that is scary and depressing. But, I still would have it no other way...I want her quality of life to be good...I want her here...but, like all of you...I sometimes wish for an hour, a day...a week, that could be mine. I don't think that it's wrong for us to feel that way...I think it's just human nature. I wish I lived closer, Hispagirl...perhaps our mother's could become friends and we could give each other a day off each week! My advice, hang in there...when it comes right down to it...a day will come when we will be glad we were there for them..with no regrets!
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Vent away - that's what this forum is here for!!! I feel the same way most days, and then feel guilty about it...it's a vicious cycle, isn't it? Neither my brother nor my sister help me - my brother lives 2 states away, and my sister lives 2 hours away. My sister didn't even call my mom to talk to her after she had surgery in September, nor did she show up for Christmas this year, but my mother always makes excuses for her and worries that she "sounded depressed the last time I talked to her..." Well hello, I don't exactly feel like skipping down the street putting my life on hold to take care of my Mom day in and day out with no help from them!!! There are days I have to laugh at it to keep from going nuts, and others (today) where I just want to cry. Luckily I have my husband for a sounding board, but there are pressures there too (I am supposed to be working & helping eliminate our debt & saving for our retirement) and my oldest daughter to help out when she can (but she has a son and husband and her own life to live, so I can't expect her to be here daily either). I certainly didn't sign up for this "job", but I also know that if I'm not here to do it, then I wouldn't be able to live with myself. It's certainly a huge daily struggle, but after she is gone I will be able to sleep at night knowing that I was the one who was willing to make the sacrifices (emotional and financial) to take care of my mother when she needed me the most.
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hipsagirl and all of you here that can relate to this topic.... We all have hearts filled with gold, the strength of a spiders web, and I truly believe that we all have been given these qualities for a good reason. People that chose to complain about things, although they haven't a clue, seem to think their useless input, negative attitudes and excuses are the reality, and they get a false sense of relief, but I'll bet any of you that those people have more unhappiness and stress living with their own ignorance, than we have giving our Love unconditionally.
I guess what I am trying to say is ....
I am strong because I've been weak....I am brave because I've been afraid....I am wise because I've been foolish!!!! Just got that from face book!!!!
We can handle it they can't, we're better off then they are ever going to be and they know it, so they try to bring us down, but I don't give them the satisfaction. And that my friends will never happen to us because we don't run and hide we get stronger and it's the only way we can live with ourselves!!!
My Mom even knows through all her Dementia and confusion that I am strong and doing everything that I can for her, she verbally pushes me away from her and tells me to "Go Home and Worry about Your Own Problems!" but she always asks for my sister who rarely see's her and makes excuses etc. She talks about her like she's an angel. Mom knows if she treated my sister in a harsh way she'd never see her again!!!
She calls me a "Pain in the ~Neck~!!!" (G rating.. I cleaned that up) The staff laughs and say's your a good daughter! I see why you are so good to her... your just like her, won't let anyone get in your way when your on a mission.
I don't take Mom's words to heart I view her actions and emotional behavior as a way of communicating.
Just like a Mother does with a baby, they cry for different reasons a Mother knows the differences between an "I feel sick" cry and an "I just want you to hold me" cry "I am hungry" cry "I am too hot or too cold cry"
I am not a Mother to a child but my Mother taught me how to react to her wants and needs and she knows how I will respond.
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Caregivers, first of all I want to say thank you for letting me vent and thank you for providing such insightful comments. Please have a wonderful 2013. My Mommy passed on on 12/27/12 at 10:45am. I haven't been able to visit this site since because I feel that I was one of the lucky ones. I see so many of you that have been at this for years; yet I was only at this for a few months. Of course this past month has been the hardest and now that she's gone, I feel grateful that I was able to have been with her till the end. I believe I was instrumental in making sure she saw all her children and even the last sister that was alive through Skype (she is one of 20). The day before she left she said to me "we have to go, dress me, we have to go." She did not want to stay in bed and asked that we pick her up. My son (23 yrs young) was here at the moment from college and he had the privilege of holding her for 10 minutes until she was tired and asked to be put back to bed. That night we heard what the hospice calls the "rattle of death" (horrible name, by the way). My brother did not want to accept that, but after her comments earlier that day, I knew the end was coming. In the morning, I gave her my usual greetings and kiss, but noticed her breathing was a lot slower than usual. The last image I have of her is peacefulness, quiet breathing, but just as I felt she was okay, I knew I had to tell my son to come say his goodbye. Before we walked back in, she was gone. Needless to say, our New Years was not the same and forever our holidays will change. I miss her every moment, but I know that she's no longer suffering. I cried, cried and still cry; and sometimes when I'm by myself I even get mad at her for leaving me instead of getting better. Silly, isn't? Please if you have any questions regarding my experience, let me know if I can help and as I said before I do understand that caregivers need time to themselves and they need to know that their loved ones are with people that care and are compassionate; so if any of you live close to the 33024 zip code in Florida, let me know and I will be more than happy to come and stay while you clear your head. I don't feel like I should be on this forum anymore, but I'd like to think I can at least emotionally support you. Please let me know if it's okay for me to remain. Thank you all for your comments and sharing your experiences. Please tell your loved ones everyday why you are frustrated and ask them to help you so you can help them. Tell them you love them every day and every night. We just simply don't know when it will be the last time we will be able to have them hear the much needed words. One last comment, a simple touch goes a long way. I found this to be true with my departed Mother. Thank you again.
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OMG, I get soooo frustrated, then get to the point of tears and my poor Mom. Due to the alzheimers, she SOMETIMES doesn't understand. If she feels that I'm frustrated and tired, she becomes helpless so that I know that she needs me. Sometimes it's a funny cycle, other's i have to leave the room and cry and pull myself together and come back. I am the primary so it's sometimes harder and i can't get away often enough or feel guilty for extended time away. Everyone does their part or should i say four of six but i get freaked if something goes wrong, thankfully the home health service (only nurses, xray,s and physical and occupational therapy) help by guiding and instructing me. I vent with my eldest sister which is bad and stressful on her and sometimes i vent with my boss who is just beginning to go a similar situation, it's hard, but i strongly feel, we don't knwo how much time we have left, and i'll be dammed if i will put my Mom in a home if we can help it and i am learning to be patient, reassuring, and try to do little projects with her that help relieve the stress like making holiday wreaths, floral arrangements, baking cookies (she will help me cut out and frost) decorate cakes or cupcakes, make candy bags etc. WE just gotta pull through for their sake. 30 years from now, we just might be in their shoes.
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Oh Hispagirl, I am so sorry to hear about your loss! (((hugs))) It must be a mixed blessing for you, but losing someone so close, especially your Mom, is rough no matter what road they took to get there. As much as we vent and gripe and complain about the realities of caring for our mothers/fathers/husbands/etc. the bottom line is that when the day comes to losing them, whether they were ready to go or not, it's still a loss that hurts deeply. My husband lost his mother to cancer in 2004 - we knew it was coming, and we thought we had prepared, but when the time came it was as if she were gone unexpectedly...you just never know quite how to prepare for that. It sounds like your Mother "knew" she was ready to go, and I'm glad you got to spend time with her up until the end.

P.S. - Of course you can stay on this site - there are a number of others who have lost their loved, one but they continue to come on and give wonderful advice!!!
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Thank you purplesushi for your words. And yes, I am blessed in so many ways.

Fraulein: I lost my father to Alzheimer and although I wasn't the primary caregiver because my youngest sibling was with him and Mom was younger and stronger at that time, I remember my lil brother's frustrations. The one thing I did learn from that experience is that because they are losing their memory you have to repeat yourself over and over again and they will not retain the information. So please don't get frustrated over this, just repeat it as many times as you need to and accept that this is the fact. It's hard I know, but it will help you not lose your mind. Thank you again for being there for me. Ana Maria aka hispagirl
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Ana I am so sorry to hear about your Mom. My heart goes out to you at this time. I have been tending to my father for two years now and I feel I can not go on another day but the another day comes and I continue the journey. It is so hard to see it happening day in and day out but you are right about being there and giving all your love all the time. No one will ever know unless they have tended to someone the emotional roller coaster you go on day after day. I had tears in my eyes as I read all of this. I too have a 20 year old son that looks up to my father like his own father that was never there for him. It is hard on him and I worry about him more than me when the time comes for Daddy to leave us. Just know you were Moms angel and you were there for her. I don't call myself no angel but I know in my heart and my father knows I have been here for him through all of it for two years. It is hard. But I do it. The other family members will never know and as long as they know I am here to tend to Dad they think all is okay. If they only knew half of it! Why is it that siblings and other family members do this is beyond me. They do not like seeing Dad like this but will never know how I swallow my pride and emotions as I have had to see and be here with pain in my heart and soul as well. Your question was should you feel guilty about being frustrated? NO I am frustrated every day and I have at times felt guilty but know that I am doing the best I can even with my own illnesses. It is the hardest time I have ever had in my life. I pray for you and the family and do not leave the site. We need you here. I need you here. Hugs to you and God bless you Ana. Mom is watching over you and your family.
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Ana Maria, I am so very sorry for the loss of your mother. I am certain that the Lord wa waiting for her with open arms and welcomed her to be with Him. I am, also certain that there is a special place in Heaven for caregivers. Giving of themselves with little to no help from others. May God Bless you!
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