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I have been a full-time caregiver for almost two months now. I feel like my entire life is a batch of mixed feelings. The hospice chaplain and social worker double as counselors, but I can't bring myself to tell them what I am really feeling. I am afraid they would think bad of me. The thing is that it really isn't so bad for me; I am doing this because I want to, Mom isn't a really difficult patient, we have a few friends who are willing to come over and sit with her occasionally, Hospice is helping, my husband has been good about not minding her dying in our home. So, why am I feeling so sorry for myself? I know I have it a lot better than a lot of caregivers.

The thing is that sometimes I do mind giving up my entire summer. Mom was given one to three months to live and she has just about made the two month mark, but sometimes I think she will just live on and on. I know she is declining, slowly and I know I will miss her terribly when she is gone and that is why I feel so guilty when I think that I wish she would just die. Sometimes, I just want life to be back to normal. Mom is living such a sad existence right now and I just can't do anything about it. For one thing, I can't connect with her. This has really been coming on for about three years, ever since her Alzheimer's started rearing it's ugly head and now that I am with her all the time, it is just worse. She can't really have a decent conversation with me and it is so incredibly boring. She doesn't like it when I read a book in front of her, so often I put in a movie because it is something we can do together, without having to talk. Isn't that awful? Even though I do have some help sometimes to get me out of the house, I am so tired of having to make these elaborate plans just to walk my dogs. My husband has gotten into sporting events with our lab and has been gone quite a few weekends and I have mixed feelings about this too. I have encouraged it and it was something we were going to do together. I want him to continue it because it is good, but at times I feel like I resent him going without me just a little and I resent Mom too at these times. My daughter told me last night that she thinks her dad should put the dog thing on hold for my sake right now, but I figure this is my mother, not his and my decision to give up my life. He has been really good, as I said, about her being here and being patient with the whole situation, but I think his patience could run out if he has to start giving up his life also. But then a little voice inside says "but it really wouldn't hurt him..." This situation actually will have an end regardless of how long my mother lives, because some time in September I will have to go back to work, and if she is still living at that time, she will need to go into a nursing home. In a way, that thought keeps me going, I mean the idea that this is not forever, that it has a definite end. On the other hand, I am going to feel like such a failure if, after all I have done, she winds up spending her last days in a nursing home anyway.

I am not at all sure that these feelings are all normal. I could justify them if my mother was a difficult person to care for. I may just be too selfish to be a successful caregiver.
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Bridget

I fully understand how you feel, and believe me please, you are not a bad person. I truly believe that reconciling ourselves with our feelings is one of the hardest parts of being a caregiver.

We have been in the hospice program since March, and the staff has been absolutely wonderful. After a few rough conversations and a few scares, they now know when I'm venting and when I am truly scared about what the future will bring. For myself and my family as well as for my mother.

My mom's nurse is pretty skeptical about whether Mom will live until Christmas and is very certain she will not live another year. She has end-stage COPD and it's very unpredictable.

What I'm really getting at is that it is perfectly normal to feel the resentment, anger, and sorrow that you're feeling. I feel it too ... every day. We want our loved ones to be comfortable and the last thing we want is for them to suffer. At the same time, we yearn for the freedom to be ourselves, to be able to go where we want, when we want. We yearn to be able to wake up in the morning without having to plan the whole day focusing on our loved one.

Bridget, if you're a bad person, then so are millions just like you and me. It's really difficult to articulate our deepest feelings without being afraid of being judged.

I know you will continue to care for your mom in your home for as long as you possibly can. Even now, I'm not sure that I will be able to have Mom here with me until the end. I work full-time, my husband is in bad health and aging. I like to think I'll be able to handle it if and when she becomes bedridden and can no longer do anything for herself, but I really don't know. I don't think anyone does until the time actually comes when the decision must be made.

Please, give yourself a break. You are doing everything you can. Please, don't beat yourself up if the time comes that you must make that decision. I see it coming for me, and I'm not looking forward to it because I promised my mom she could die at home. Now, I'm not sure I can keep that promise. Sometimes, we all make promises we cannot realistically keep.

My prayers are with you, Bridget. God bless you.

Dee
Bridget,

I can certainly relate to what you are feeling. I have been caring for my mother since December, 2006. She is currently undergoing chemotherapy. Her original diagnosis was colon cancer. She had 35 radiation treatments. After her last PET scan we were told her cancer had spread to her liver, spine and upper abdomen. She has no use of her legs. My husband and I lift her out of bed into her wheelchair. We have given up our bedroom and bed. Our king size mattress and headboard are in our dining room and we sleep downstairs in our family room/home office on an air mattress. (currently we are on our 5th or 6th air mattress �V we have both lost count ��. I have two brothers and one sister. They all live in the next state (about an hour and 15 minutes away) Anyway, I am caring for my mother 100%. The visiting nurse comes in once or twice a week. No aides, no one to sit with my mother and it gets to me. I feel very angry and resentful but most of those feelings are directed at my sister and younger brother. My older brother gives me emotional support and helps out financially. My sister and other brother are another story. I know I am doing the right thing for my mother and I try not to let her see me frustrated, angry, etc. It is very difficult. My husband tells me it��s not forever and I try to realize it��s a temporary situation. I guess what bothers me the most is that my sister never offers any kind of help. She is married with no children. She has pets. She does work full time. She has some health issues of her own �V arthritis. She has had two vacations so far this year and did not offer to come and sit with our mother for an hour or two to give me a break �V nothing! The last time I talked to her on the phone she kept saying to me ��I wish I could do more.�� But she hasn��t done ANYTHING! She brought me a box of garbage bags back in January. My younger brother is the same way. The two of them wanted our mother put in a nursing home back in December before my mom was even diagnosed. I would not hear of it. My husband and I are very blessed and fortunate enough to have our business right here at home. We don��t have a huge home but we sacrificed our bedroom so my mom could be taken care of here. I just didn��t expect to feel so alone most of the time when it comes to caring for her. I get tired of sitting watching tv with my mom. I try to think of things for her to do. My older brother gave her a laptop computer which she was using for a while but now it just sits there. I subscribed to an audio book club for her but that interested her for a while then I was paying for it and she wasn��t ordering any books. My husband and I have put up bird feeders outside for her to watch the birds when she is outside. She does enjoy watching them and being outside. We put a lot of flowers out there also and we do have a large deck and she likes being out there. But I feel guilty leaving her out there by herself and my husband does also so a lot of times we don��t get work done during the day and wind up working till late at night.

The doctors have given her 6-9 months to live. She does not accept that. She keeps thinking she will get better and things will be back to normal once her chemo treatment is over. I can see her declining. Her stomach is so big she can hardly turn from side to side in bed.

Sorry for going on so long. I guess once you get started it��s hard to stop. I��m glad to know I��m not alone in what I am feeling but I know I am doing the right thing.

Take care,

Jackie
I am also glad to know I am not alone in feeling the way I do. I do not think I could take 6-9 months of this or until Christmas. I think I can honestly say that I do hope Mom doesn't live till September, as that is when she would have to go to a nursing home. Mentally, she is getting so much worse though, that I wonder after the first few days if she would even realize where she was. I am an only child, so no help from relatives; however, from everything I have read on here (and your situation, Jacquie, seems to bear out) it seems like those who have brothers and sisters don't usually get anymore help than I have. Seems like it is always one who feels responsible and the rest don't. I guess the worst part for me is the isolation, the feeling that I am not a part of the world anymore and that others just go with their lives. Yet, I don't expect them to do otherwise, but voila, there's my mixed feelings again. That and the fact that it is so damned boring.
Bridget........I know where you are coming from. I was you 1 1/2 years ago.
My Mom's journey is now over and it was and still is very rough.
Mom had end stage COPD and CHF. When she came to live with us she was given a few monthes. Mom was here 3 1/2 years.

There were many days when I cried in the shower, in the car. I wanted my life back. I was tired, agitated all the time and very, very scared. Mom wanted to die with me holding her hand. I was petrified!!! But looking back on it now, I wouldn't change anything.

As I started to see Mom declining, I could feel myself getting more and more scared. I was on an emotional rollercoaster. One day I was up, the next, I was very down.
You are greiving right now, even tho your Mom is still with you.

Things finally made a change when I changed my prayers to GOd.
I was always praying that 'this' would be over soon.
When I started praying and asking God to give me the strength to handle whatever was ahead, things seemed better. Mom died 2 weeks later in my arms. She went very peacefully in a very short time. Her death was not a long, drawn out process.

Ask God to give you the strength to handle what is ahead of you and your Mom. I know with His guiding hands, things will get better for you both.

God Bless......
Bridget, you are being a good caregiver and your feelings are quite normal, at least to me because I have them all the time. Don't be so hard on your self. I think being a caregiver is the hardest job their is. I also found that attitude makes or breaks the day. I am trying to stay up with me DH and it seems to be working for the most part, but I also have my days that I just don't want to take care of him. Some days I just want to get in the car and go.

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