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New to forum...need a sounding board.

Posted by onlyone (My Page) on
Fri, May 8, 09 at 23:43

I am glad that I stumbled upon this forum. My family has been dealing with so much lately, I feel as though I am on the verge of loosing it completely. My DH and I care for my FIL, who will be 95 in June! We have a 3yr DS and a 12yr old DD at home. My FIL is an amazing old man, still full of spunk, but obviously, age and dementia are slowing him down. But the real reason for this post is about my dear Mother.

Last November, we got the gut wrenching news that mom was diagnosed with Breast Cancer, with Mets to her liver, lung and abdomen, her prognosis was not good. When she was diagnosed I was in shock, and immediately took a LOA from work to care for her. She is only 61 years old, and I had to come to grips that she ignored her health and flat out refused any chemo. Thank-fully, in January she agreed to radiation to her pelvic area and tubes inserted into her kidneys to help them drain due to a blockage. Since then, there has been no other treatment.

The plan in the beginning was to arrange for homecare, and also between my sister and I, we were going to travel back and forth and share the duties of keeping mom safe. Mom lives in a different Province. It never turned out that way. I am the only one staying with my mother. I basically have been home on three different occasions for short visits. I have given up so much, it just hurts right now. I miss my home, my family, my children, my husband...my DH has been very supportive, and god bless his soul, he has been running the household, working full time, and managing the best he can with an aging father with dementia, a toddler and a pre-teen daughter. It has been rough on all of us...I just pray that we can keep it together as a family.

The hardest part of all, is the fact that I am loosing my mother. She has been in and out of hospital, and during this last hospital stay, I had to come to terms that she would not be coming home. It was hard, I had many a sleepless night, just crying all by myself in her apartment. Then, her doctor told mom she could go home if she wanted. I was shocked, and just went into a tail spin. The emotional roller-coaster has been overwhelming. Now,I am looking at this in a different light. Please tell me if I am wrong. I cannnot sit here waiting for my mother to die, which is basically what it seems like it has come down to. I decided the other day that I will call in for help, and arrange for respite. Mom was not too thrilled, she has become extremely dependent on me. I will arrange for mom to go back to the hospital for two weeks, so that I can go home and try to rekindle some of our old life back. I was so scared to go this route before, because mom is so frail. But now, I think I have to for my sanity, and my families sake. I will plan to keep this up for however long I have too...two weeks home, two weeks with mom. Not sure how respite works, the worker has not returned my call yet, but this is what I am hoping for.

I am also feeling very guilty for this. I have been here with my mother through it all, and have watched my mother deteriorate before my eyes. She is mostly in bed, but does get up at least twice daily to sit in the living-room with me for about an hour each time. She eats very little, but still drinks fluids. She cannot stand noise, so no music, no tv, and bright lights hurt her eyes. But, I still think she is strong, she has been this way for the last month, no change good or bad in her health. Am I crazy for thinking of leaving her now, after everything that we have been through. I told my husband I just could not, would not, sit here staring out the window all summer long, by myself....I just cannot do it. I love my mother dearly, but I also think I am loosing my mind, and loosing my family at the same time.

Sorry this is so long, but I just have to let this out. Please be honest in your replies. I am so confused and alone right now, I need some advice from people who have been there, done that.

Thank-you!


Follow-Up Postings:

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RE: New to forum...need a sounding board.

First thing to do is abandon the guilt. Do NOT tear yourself up over this. Death comes to us all and to all we know and love. None of us knows how it's going to go. In your case, maybe you'll be there at the end or maybe you won't. Maybe she'll still know you're there or maybe she won't. Can't plan these things out. All you -- or anyone else -- can do is the best you can. Life does go on...and it deserves priority. You and your family deserve priority.

I do encourage you to do as much as you can on your mother's behalf. Just don't pretend that you can do everything you think "should" be done or everything your mother thinks you should do. It is possible to strike a balance but it's never perfect. Preserve yourself and your family. You must give them priority. If your mom's still thinking straight, I have little doubt she would agree.

It's a painful time. But it is a common circumstance. Sounds a little careless to say "lighten up"... but you really need to. You can manage this. And your family will still be there when its over.


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RE: New to forum...need a sounding board.

My heart really goes out to you and your family. I can't imagine the stress you've been under, not to mention the grief and the guilt. You are only one person and it sounds like you've been doing the job of many. I think you've made good decisions concerning your mother as difficult as they may be. Watching someone you love so dearly fade away is so difficult.
Don't feel guilty, as much as you love your mother, you have you and your family to consider and it sounds like you are doing the absolute best you can. Thats all you can do. I really wish you and your family the best. Hang in there and "vent" here anytime you need to.


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RE: New to forum...need a sounding board.

I agree, the first thing to do is to abandon the guilt. You have to think of yourself, as well as your mother. If you don't take care of the Caregiver, you can't take care of the patient. Trust me on that one. I've been in your shoes. I had a full life when my mother became terminally ill. I couldn't leave my family, my job, my life for what would have been 6 months just to care for her, especially since she lived in a different state. At first, I was just there as often as possible. As she worsened, I arranged to go down to part-time, and I literally flew out to her on a Saturday, took 24/7 care of her for a week, left the following Sunday (and hospice took over, along with close friends) and flew back, worked a full time week and spent time with my family, and flew back the following Saturday. It was hell. I kept it up for just over 3 months, except during the last 3 weeks, she was so bad I didn't go back home because they didn't know when she would die. I would do it all over again, as hard as it was. But I WOULDN'T have given up the times I went home. I just needed to "touch base" with my family, my job, my friends -- my "normal" life, just so I knew it was there, I guess. What I was dealing with in terms of my Mom was so much like being out of touch with reality, that I needed that touch with reality to stay balanced. So listen to yourself. If that's what you need to do to get through this, THEN DO IT! You won't be sorry. My mother passed 11 years ago, and I'm still not sorry I did it the way I did. MacThayer


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RE: New to forum...need a sounding board.

Thank you so much for your responses. What has kept me going was the thought that I have my whole life ahead of me, and I can afford to give up a little slice for my mother. But, it is just so emotionally draining. I don't think this would be so hard if I had my family to go home to everyday, or night. But, I am so far away from them, it just makes this journey harder. I talked to homecare about respite, and they will make arrangements for mom to be admitted into one of the nursing homes for three weeks. We will try this out at least once and see what happens. I am trying very hard to let go of the guilt. I just need to "touch base" as Macthayer stated. Regroup, refresh, and recharge!


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RE: New to forum...need a sounding board.

Is taking her to your home a possibility? Maybe put a hospital bed in your living room for her?
I agree you NEED to be with your family. Just trying to figure out a way for you to have the best of both worlds.
Hang in there and thanks for sharing. Please keep in touch. There really isn't anything we can do, but give some moral support. Venting really does help some.

MacThayer, what a blessing you were to your Mom. And there is nothing like advice from someone that has already walked the road that we have ahead of us.
Betty


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RE: New to forum...need a sounding board.

I talked to my mother about moving her back home with me about 2 months ago. We entered a dark period after that discussion. She is so stubborn, she does not want to move. We both felt resentment, and when your mother is dying, it is not a good place to be. So I left it alone and vowed never to bring it up again. BUT, now things have changed. Our caregiver has resigned, and if we don't find someone willing and capable to care for my FIL and my children, which will not be an easy task, then I will have to find alternate arrangements. Today I talked to mom again. She still does not want to move away, so I told her that our only option would be a nursing home here. I could always drive back and forth with the kids to see her over the summer. I even suggested a nursing home back home, but she would not have it...apparently they would not be able to change her dressings.

Even if mom did agree to come home with me, I believe it would be too much for everyone. We still have our 94yr old FIL at home needing more and more care as he ages. I would go absolutely banana's. I also think it would be too difficult for the children, to see grandma so ill, and also the thought of them losing grandma and grandpa...oh the pain they would suffer. It will be hard enough on them to lose their grandpa when it's his time, they have grown so close to him.

I am just taking it day by day. Looking forward to my respite for now. We will see what will happen after that. Before I go home, I will inquire about the nursing home situation here, just to be prepared if it comes down to that.

This is a great forum...so glad I found you guys.


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RE: New to forum...need a sounding board.

I think you are doing the best you can with the situation and looking into a nursing facility is very wise. You would be taking on so much trying to handle both your mother and FIL. Good luck and please enjoy your respite the best you can. Let us know how its going.


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RE: New to forum...need a sounding board.

Please check into Hospice in your area
I know that many people find that this is a great help
Type in Hospice in Google and that will lead you to your area.
Good Luck
Connie


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