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Strong Mixed Emotions 
Started by mich2
24 May 2013, 2:04 PM

My mom (78 yrs) was diagnosed with small cell lung cancer 7 years ago. Over the years, she has gone through radiation and several rounds of chemo with great success. 

Recently we found out that the cancer has metastasized to her liver.  Being the fighter that she is, she decided to start another round of chemo.  This one made her sick.  She developed pneumonia and spent 2 weeks in the hospital recuperating.

I should also state here that she is a type 2 diabetic and her condition is controlled by diet and meds. 

Sometime over the years she became a princess, in that she does nothing for herself, doesnt get up out of her chair to do anything other than go to the washroom.  My father waits on her hand and foot, does laundry, makes meals, shops,....everything

My father and I are her primary caregivers.  They have been married 62 years and are still deeply in love with each other.  My dad is also what i call a putterer, always doing something, not sitting much.  I live close to them and go there every day to make sure things are okay.  I do their housework and yardwork.

A year and a half ago mom was in the hospital with cellulitis and at that point I got home care involved, because although I live very close to them, I cant be there every minute and I needed some help.

Both times that mom was hospitalized, I have had to take my dad to emerg because he gets himself dehydrated, ends up with dizzy spells and then I have 2 parents to care for instead of just one.

We have now got home care more involved and mom is at home under palliative nursing care nursing (on call, not full time).  She is in a wheelchair and having trouble with her O2 levels dropping on any amount of exertion.

During this time, I ran myself into the ground trying to make sure that all the bases were covered and that all services were in place.  I got respite care for my dad for 2 hours a day so he can do whatever running around he needs to do and so that there will be someone there with mom all the time, as she cant be left alone. 

I am a basket case after running myself ragged and I need to be able to get myself back together, and have the chance to take a bit of rest and respite for myself.

Yesterday, we were going over to their house for dinner.  When we got there, dad said that he had to go to the store because he told the respite nurese that she didnt need to stay.  He told me that he let her go because mom thought she was "odd". 

I explained how I was feeling about this instance to them and was greeted with what I felt was platitudes.  I tried to explain that I need to get healthy to help them.  Now Im feeling really selfish, angry, worn out, and very much likeI dont matter to anyone.  I have no one here to help me as far as family goes.  My brother has decided to move out of town before my mom dies because he cant handle it.  Does he think that I can????.  One of my sisters is a truck driver and cant help very much. my other sister lives and works in another city.  My husband works out of town....so here I sit.

There is much more that I could add, this just is the straw that broke the camels back so to speak.

I need to have some guidance about the way im feeling, the anger, sadness, frustration, etc.

Thank you all for listening, and Im sorry if anyone feels this is pretty trivial.  This is very hard for me right now.
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Reply by NatR
24 May 2013, 3:35 PM

Dear Mich2,

wow your story is involved!
you are not crazy and you are burned out - and you are entitled to cry about it, scream to the sky and feel  isolated.

you will find many others here on the forum who are doing similar supportive care for parents and spouses - you are not alone.

i am a former front line caregiver who struggles with only part time caregiving duties with a family member - but I hear you - I am one of those who never stops and feels I haven't done enough.

It's time for you to step back and take care of you too!
your father is shooting you in  the foot - sending the home care people away, and I am sure you feel overwhelmed!

hang in there, others will write with support and ideas

You cannot do it all.
guilt and obligation drives us to do more, try harider.
hang in there and know you are not alone.

your mom sounds like high maintenance for both you and your Dad 
its time to get a scheduled support staff covering their needs - and for you to rest 
easy to say - very hard to do.

sending bestwishes 
NatR 
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Reply by Brayden
24 May 2013, 3:59 PM

Dear Mich2,
Your story is so true and heartfelt. Caregivers allow themselves to get into your position because they have never experienced it before and are not aware of the warning signs along the way. You are so normal. The best thing for you to do is work at removing the guilty feeling that you should be doing more. If you do not restore yourself, you will soon be doing less. You may have to be very frank with your father and let him know in a loving way of your limitations and that he should respect that. One way he could do that is by making better decisions. Also, are there friends of the family that could help with some scheduled respite? Sometimes you have to be assertive and make the request. Thanks so much for your honesty here and feel free to vent here if needed. We care for you.
Brayden
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Reply by marstin
24 May 2013, 5:14 PM

Hi,

First off I want to reassure you that what you are going through is not a trivial thing. What you will find on here is compassion and support as most of us are going through or have gone through similar circumstances. Your emotions are real and raw and we will try to make this a little easier for you to deal with.

It is good to hear that you have home care for your mom to help with some of this heavy load but I can hear the exhaustion in your words. It's never an easy time but when you feel like it's all heaped on you, it does bring out the anger. I liken it to disappointment that no one is hearing you, supporting you and you are so frustrated. I understand that so well.

I'm not sure why your brother feels the need to run away just when you need him the most but have had the same experience with my brother. I lost my partner to bladder cancer in July 2012 and the following day my mom was admitted to the hospital and we lost her 7 1/2 weeks after. My brother was there in the beginning but as things progressed with my mom, he distanced himself. On her final day he showed up just as I was going to call him to say this was probably the day. She passed away with us by her side soon after. Within 5 minutes my brother said he had an appointment and ran out the door saying he would be back very soon. I was shocked. I waited for about half an hour then had to take myself outside and a stranger saw me crying and came over to console me. A Stranger! My brother came back in about an hour and was shocked that I was still there. I have never understood why he took off so fast except to realize that it was his way of coping. He gave no thought to the fact that I had just lost my two closest people in such a short time span. I tell you this because I can only guess that they have more trouble dealing with and feeling emotions than we do. It does not make it easier for us that have to carry that load.

Your dad sounds like he feels the need to take care of your mom at any cost to his own health and expects you to do the same. There is only so much that one person can do and it does sound like you are at breaking point. I am glad that you realize it. You have to take care of yourself and not get so broken down that you are of no use to anyone including yourself. Do you have children too?  As difficult as it is, you need to set some boundaries and set aside some time just for yourself. If your brother is still around, he needs to step up and take on some of the responsibility.

Have you considered getting some councelling? It might be something that you could look into and they might have suggestions on how you could deal with all of this. We on this site will walk beside you and give you support. Please feel free to vent here as much as you want. There is no judgement here, only understanding.

Hugs,
Tracie
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Reply by mich2
24 May 2013, 9:14 PM

Thank you all so much for the kind words of encouragement, and the assurance that im normal. (?) lol.  I appreciate it and definitely needed it.

i am trying to get an appt with a counsellor.  When i called mental health services today at 9 am, i got a recording saying that no calls will be returned after 11 am on fridays.  ???  So i left a msg that i assume will b returned on monday.  Wow....only 3 days to wait to hear back.

i do have children.  2 of them live out of town and one works out of town but they r there for me to ralk to.  

One main reason i am so worried is that i have had a couple of small strokes already and im afraid that this stress i am going through could hurt me very badly. Then i wont b any good for anyone.

it is so good to know that there is someplace to go when i need to talk.  Thank you all for being here for me.  God Bless You all!!! 
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Reply by pudding
25 May 2013, 8:49 PM

Hi Mich2, I think its really tough being a caregiver. My Mom passed from stage four cancer three months ago, and we took care of her for the last year through her decline. I went through all the feelings and emotions you had, it;s awful, its exhausting and in its own way rewarding. Try to do something for yourself, a movie, lunch with a friend, small thngs made a world of difference to get through tough times. sending u lots of love and lignt.
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Reply by mich2
26 May 2013, 12:40 PM

Thank you pudding for the love and the light.  Im sorry about your mom.  Im sure that you were a great comfort to her.

I am trying to get things sorted out for myself.

Last night dad called about mom being in distress.  I was asleep and when he realized that, he started to apologize and I could tell he felt bad.  He told  me what he had done to help her and I assured him that he had done everything correctly and that he would call me back if it didnt work. 

I waited about 5 or 10 minutes then called him back to see if everything had settled down.  Mom was starting to relax with the atavan and seemed to be helping.

I told him to call me anytime day or night if he needed me. I told him that I would be there anytime he needed me to help when something like that happens.  That all he needs to do is call.

I had talked to both of them about what I needed and now I feel that they heard me, which is good. I just hope they dont think that means that Im backing off from giving them the help they need. 

It is very hard for me not to go over there immediately when they call, but i think its important for me to determine whether it is a crisis or a 'spell'.  I really hope I dont make a mistake there.

Thanks again to everyone on here.  I think ive found my lifeline.
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Reply by marstin
26 May 2013, 6:01 PM

Hi mich2,

I can imagine how difficult it was for you to set some boundaries. My mom was extremely dependant on me for everything and when my husband came home to spend his final days, I had to devote more time to him than her. Unfortunately, she wouldn't tell me or other family members that she was having major health issues which ultimately killed her.  I do bear some guilt for that because I knew something wasn't right but as you know, one person can only do so much before they compromise their own wellbeing and sanity. When you are so programmed to take care of others it is very difficult to put some distance between you and your families needs but there is no other choice if you want to be supportive yet avoid crumbling under the pressure. It's not selfish, it's survival.

Understand that you are doing the best that you can and that your dad has to allow professionals to take on some of the load so that he survives this as well as you.

Hugs,
Tracie
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Reply by mich2
18 Aug 2013, 8:12 PM

Hi everyone, 

My Mom passed away on july 17.  I wish I could say it was peaceful and easy but she fought to the very end!

thank you all from the bottom of my heart for your support and kind words.  They meant a lot to me

Michele 
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Reply by moderator | modératrice
18 Aug 2013, 10:08 PM

My sincere condolences for your loss Michele. Thank you for taking the time to share the news.
 
I can only imagine that you are experiencing a new sense of mixed emotions - the title that you gave to this thread when you first posted here. Our support is ongoing and we're here should you wish just to talk.
 
How is your father doing? How are you doing? 
Colleen 
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