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tator3232 posted:
I'm at a stage in my mothers dementia where I thought all the hard stuff was behind me. She is in a really nice place and all the medicare/medicaid red tape seems to be handling any financial worries. She seems to be content meaning she is usually happy and she never says things like don't leave me or take me home although when I go to leave her eyes fill with tears but she never says anything. It is a confusing feeling to have her still knowing that she doesn't want me to go but yet can't express her thoughts into words that make sense.

Anyway back to my origanal thought. I was wondering how you deal with being the only one that seems to care. I'm not an only child but the rest seem to be content to have her there and don't seem to care if she goes months without seeing anybody or going out. I have stopped pushing because it is just to much more irritation on my part when I get excuses or the always handy, "I can't deal with it." Hey guess what neither can I but I do it because she need me to. Like I said because now I know that I can talk and guilt and plead without any results it is something that I just don't do anymore.

My mother is only 74 and physically healthy for her age. I see this continuing for years to come and I feel alone. Not in the sense that many others aren't going through the same but in my love and concern for her. I can't deal with going and spending time with her at the facility because it's not like we can share much there. No real conversation is possible, yes she chats alot but nothing make sense. So I try to take her places, she enjoys anywhere where there are people she can smile and say hello to and I have found that for the most part even in stores people are friendly to her even while looking very confused.

Off track again....oops. Anyway I hope someone can understand my rambling and maybe have something to offer.

I'm tired of feeling this way angry and frustrated and hurt for her, but I see no end to it because the situation just isn't going to change.

Aprill
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suezee52 responded:
Cyber hugs to you. You are not alone as there are many of us in the same boat. I was once told that in most families, even very large ones, there is usually only one sibling that is a caregiver. The rest of the siblings are fine with putting mom or dad in a care facility and forgetting about them. Out of sight, out of mind. But us caregivers are a special breed. We want to take care of mom or dad. We couldn't turn our backs on them if we tried. And we don't understand our siblings that can. We do what we can to make our aging parent feel better and try to give them something to live for and just show them our love. You cannot change the way your siblings are anymore than they can change the way you are. You just need to accept that they are very different than you and have totally different priorities. When the time comes to lay your mom to rest, as it will some day, you will know that you made her last years good ones and you will have no regrets. Your siblings will. They might not admit it, but they will. You should be proud of yourself! I'm proud of you! I know it makes you angry and frustrated, but there is no way to change what you cannot change. Accept it and move on. Don't even talk to your siblings about your mom. Just continue to see your mom as much as possible and show her lots of love and caring and support.

I know it hurts your mom for her other kids to blow her off like they do, but hopefully her memory won't be really good and she won't dwell on it. Dementia can be a good thing sometimes.

Take care,

Suezee
 
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tator3232 responded:
Thank you Suezee for your kind words. You haven't told me anything I didn't already know or have tried to convince myself of (still trying). There is a book "He can still move Stones" I hope I have the name right. There is one chapter on family and accepting them as they are because no matter how much you want to your just not going to do it. I believe with everything I am but I am not what you would call overly religious. I really enjoyed this book. It is stories from the bible interpretted into our everyday life told kind of situations.

It just makes no sense to me why it has to be so hard on one if everyone would just help even a little then it would be so much easier to deal with.

Tomorrow is Mom's 76 birthday and I wonder if they even know

Thank you again, Aprill
 
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suezee52 responded:
I hope your mom had a nice birthday and that all of her children remembered. But if they didn't, don't be surprised. I know it's disappointing and frustrating, but if you made your mom's day a good one, then that's all that matters.

No, it doesn't make sense to me why siblings don't help out with the caregiving. I agree that it would make things easier but it just doesn't happen much. My half-sis wanted to just put Mom away in a nursing home. She was more concerned with herself and not what was best for Mom. She didn't get her way, however, cuz Mom had enough foresight to give me POA over her. It was the smartest thing she could have done! After Mom passed away, I did feel as tho I did everything I could have done to make Mom's last year a good one. I had no regrets at all. I was at peace with myself cuz I knew I had done right by Mom. My half-sis, on the other hand, had lots of regrets and had a hard time dealing with it. That was her problem and I don't feel any sympathy for her. She had many chances to be with Mom but blew them off.

Just hang in there April. As long as you know you are doing the right thing for your mom, that's all that matters. And believe me, it's not easy to be a caregiver, but it is emotionally rewarding.

Take care, Suezee
 
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roses responded:
Hi April

I feel your frustration, only I am the one on the other end. I am the one that needs a caregiver. My DH is my caregiver. He has been taking care of me. Tonight there was a change. He asked me where the bathroom was. I know where the bathrooms are.

But back to your problem. Can your mother go to a Senior retirement center? There are a lot of good ones.

My husband feels alone. He and my son are my only caregivers. Feel free to vent. You need to. My DH and darling son and I need to vent. Do not apologize for it!!

Go to the Senior Center and they give you a lot of help.

Your Friend

Ruth
 
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jeannewl1939 responded:
Reading this I feel I am living with my Mom's dementia all over again. When I had to put mom into 24/7 care it was so hard. And she cried and begged me not to leave her. Your 2nd paragraph was me talking. and mom was healthy. this went on for 4 1/2 years. then she just went to sleep and died. your 3rd paragraph also was me and mom. so I do understand and I miss her even tho she just thougt I was some nice lady who came to see her most of the time. I know you are tired of feeling angry, frustrated and hurting for her. but, she is oK...... it is now time for you to "fix" yourself. it took me a long time to get over the "stuff". I did not have a place like this to go and vent, and my family thought I was the one with problems.

I did have my church family (oh the stories I could tell you about me taking mom tochurch with me..... but I cherish those memories) and by faith I was able to heal. so VENT, VENT AND VENT SOME MORE. I'm here and I'm listening. Hugs jeanne living in paradise
 
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renalupie1 responded:
that is why I came here. My older brothers would not help or see mom, my next up brother would see her, but not really come often and would complain if I asked him to take a day at the hospital to give me a chance to work or be with my child. No one understands better than a fellow caregiver the loneliness and trials that we face. It rips your heart knowing they want to be home or anywhere but the care center. Taking her places is awesome and I commend you for finding what works for her.

All I can tell you is in the end, you have the peace of mind you have done what you do. Your siblings will be the ones going " I wish I would have". I got great comfort in knowing I did about everything I could for mom. If I could have figured out how to have her home that last year of her life I would have. but I couldn't figure it out. Let go of your anger and focus on your time with her and trying to make it as good as possible.

rena
 
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afallen66 responded:
April. My heart goes out to you! Our stories are very similar in the fact that we both have two siblings. I have brothers and am the only girl, the baby of the family..I am my mothers caregiver,she lives at home and i moved i with her in 2005. Since that time, my brother who lives less than two miles from here has visited maybe ten times. My other brother who lives in Memphis can't visit that often, but calls a couple times a week and talks with me and mom.Like you I have a terrible guilt when I can't answer why my brothers don't come around. I see the disappointment on my mothers face each time she asks,my mother stills knows everyone and it makes me anger that my brothers aren't taking advantage of this time to be with her while she still knows whats going on in her life! I have talked to them till I could just scream,both saying "we are glad you are here,because we don't know that we could deal with this".meaning thanks for taking care of her so we can live our lives!!!!!!!!I love my mother and will be with her till the end, but I'm afraid the end will be for me first..
 
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Wishful2day responded:
I am a caretaker for my Father who is 84. Recently I made a desperate cry out to my Family. In one week I found out my dad was in early stages of Kidney Failure, soon to be on dialysis, and in the early stages of Alzheimers When I stated that, my sister told me I wasn't qualified to diagnose him. I also told my dad that I was not able to do everything by myself. I take care of his medications, dr appointments, financial payments, cleaning, and cooking. I was able to take a vacation for 9 days. I had not had a vacation for 10 years. My dad has four daughters, I am the caretaker, and as he reminded me when I got back he had some things that only I could do. My sister took care of his meals and pills for that time, but that has ended. What happended to me. I have been under a lot of stress and anxiety lately, and ended up in the ER. My life doesn't allow me to live it, and when it comes down to it. I don't know how to take care of myself. I FEEL HOPELESS, and ALONE...I am 52 years old, my body is falling apart, I physically hurt, and emotionally drained. I can't continue to be everything to my aging parent, and mean nothing to anyone else. I am tired of being last on my list.
 
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unknown responded:
You aren't alone Wishful. Not at all. Your family may not be backing you up right now but we can and we can help you make the connections to get help for your dad and you as well.

Hang in there.
 
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renalupie1 responded:
It is perfectly normal for one sibling to end up the caregiver. Only one of my brothers would visit mom and he wouldn't lift a finger to take care of her, just sit and talk to her. Fortunately we didn't deal with dementia on a large scale. But it was a very isolating experience for me as a caregiver.

One thing I can tell you is good for you for taking her out and about. People are more understanding than you realize and I always champion those who do the little things that mean so much for the elderly. I was the only one who took mom on trips or out shopping, tiring as heck, but she was so happy and grateful. To her those outings reminded her she was still alive.

In the end, you will be the one without remorse. You have done for her what others won't. Let go of the anger, and focus your energy on sharing your love with her. Anger is not productive. You will not have the "shoulda's" when she passes. Be thankful for that.

Rena
 
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tator3232 responded:
Firstly I want to thank you all for sharing with me, your help, your hurts and even your anger. I only wished I would have taken the time to read what you had posted way before now.

My Mom past away in August. She is at peace now and so am I. I found a way to just let what my brothers and sisters didn't do not to effect me. I didn't know if I could I thought that feeling might get worse after her passing but it did not. I was with her the night that she died. Just me and her, just as it always was, just as it should have been. She wasn't in pain and as always totally unaware but that night I knew her spirit was there in that room and she was very proud of me. I find myself so relieved that her suffering is over that it is very hard to be sad that she has pasted. After all I had already been grieving loosing her for 6 yrs.

My Sister and her boyfriend a registered nurse came to stay with me the beginning of July and took over seeing to mom's care at the nursing home. We also had the assistance of hospice. It was the help I needed when I most need it. As a family we decided to take her off any and all medications except anything for her comfort. The doctors said that in doing this she may go into a diabetic coma and pass within days. Haha she fooled them. She became more alert and happy for almost a month before she did as they predicted in the morning her blood sugar skyrocketed by later morning she was totally unresponsive and past by the next morning.

I would hope that this thread would stay going if only for those out there in the same place I was can see that they are not ..................ALONE.

I want to thank each of you for sharing with me when I reached out for help. I hope that I can be there when someone else needs the same. I do not get here to often but I hope just reading down this thread will help others.

Thank you all for being there and God Bless each of you!

Aprill
 
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GAP1954 responded:
In all the work I do with Caregivers (capitalization intentional) I think this is the most common complaint and certainly the most frustrating and hurtful. One practice that seems to help is a facilitated family meeting. This is a formal meeting of all family members willing to sit down and air their views and focus on developing a plan of care. It requires an experienced facilitator to be effective since the views are usually very different. Go around the table allowing each person to state the situation the way they see it - no one else comments or challenges etc. I use a series of 10-12 questions in my practice. At the end of the Q&A you have revealed more of the real situation than you realize. From this can come agreements or at the very least clear understandings on who, what and why family members will or won't participate in the care program. The book you refer to has a good truth - your family is imperfect but they are your family.
 
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CaregiverforMom responded:
Sometimes people go into self-protection mode because they can't cope emotionally with a loved one's illness. Your non-contributing family members probably suffered guilt and self-condemnation, and the grieving process over your mother's loss will be longer and more damaging to their hearts and spirits than yours because you have the peace of knowing you did what was needed. If you are so moved, your acceptance and prayers may help your siblings to heal and to move forward emotionally and spiritually. Your mother would want her children to be close. Take care of one another. God bless you for taking care of your mom. Linda www.godmomandme.com
 
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Lynbensebring responded:
Feeling tired, angry & frustrated won't be good for your health and your mother... And I thank you for sharing this with us. Sending you a big HUG, you're an amazing caregiver! Having these emotions are so "normal" but so useless that it will eventually drain you of all your energy when you care for someone dementia or not. Unfortunately not everyone in your family have the same reaction and I understand and feel for you as I face the same situation, mine is a long distance care partner for my sister (55 yrs.old) with Lewy Body Dementia diagnosed 2 yrs. ago. We can all agree that for some it is total denial, being paralyzed, stigmatized about the disease itself. I decided that information is power and like it or not I will be sending e-mails & articles about the subject non-stop. From the latest statistics either them or one of their children in a near future will be touched by this disease like it or not! So tough sh.t!! they need to get their heads out of the sand... If more people know or try to understand about this terrible disease the better we will be able to care for them. Please don't wait for them to change, you are already a thousand miles ahead from them and stronger.. So, since you don't get any support from your family, I would strongly suggest that you join one (support group) in your area so you'll be able to share your emotions and find solutions. You're not alone!! We see & feel with you!


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