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My feelings have scrambled 
Créé par wits end
12 mars 2015, 15 h 09

Hello,

My mother was diagnosed in 2006 with lung cancer. She has for the past few years been doing well. She recieved chemo and a pill called Tarceva which was used when we found that there were some lymph nodes discovered. However since the original cancer is growing she was taken off the pill.

I have become very frustrated, as she has been told in the past to gain weight, exercise and enjoy life. We do not have an estimated time as it has been 9 years and the doctors are very happy with how long she has been living with the cancer. They have called her an enigma!

My problem, I suffer from various types of feelings. Sad, angry, frustrated and stressed to the max. I moved in my Mom 4 years ago after my husband passed from aggresive cancer. Mom has the attitude that because she has cancer that everyone should cater to her and tolerate certain behaviour because in her words. " that's just me". My whole life we never really got along but I moved here to help her. Although she has no problem being negative with us she just doesn't understand how it makes me feel. I am here for her and I want to help but her personality presents many challenges. I don't cook right etc. I am 60 years old and she forgets that I am an adult!

Her health is decling but I am still here for her. This is where the resentment comes in. I have no life as she cannot be left alone.

I appoligize for all the babble but I am putting this out there. Has anyone ever gone through all these emotions while being a caregiver?
 
Réponse de NatR
12 mars 2015, 17 h 58

Dear wits end ,

welcome me to the forum.  Thank you for sharing your story and your feelings.  
I am so sorry to read that you lost your husband as well from cancer. My ou have been hit hard and here you are taking on the caregiving role again.

it sounds to me like your mom has been taking you for granted in a way.  This is a tough situation..we all need support at sometime in our life.  Your feelings of resentment, not being able to cook right or do things right Is a common thing ... I think in a lot of ways your mom may feel angry also about her cancer and need for support.

i am close in age to you, wits end, and although I didn't caregive for my own parents, due to distance and other reasons...I know it would have been a very difficult thing to take on.
i habe however done my share of caregiving as a personal support worker abd as a family member 

i want to suggest that although you have moved there, live with your mom, and have given up your independence in order to caregive, that there is no reason for you to be there 24/7.  Is there? 

I suggest that that you arrange some community support and allow someone to come in and take over the reins for a couple hours here and there.

there is nothing like "recharging the batteries" and taking care of you!  In fact it's necessary.

i hope that you will feel at home here...and look for that window of opportunity for youself.

you will feel like a million bucks when you start putting yourself first..even if only a few short hours a week.

you are entitled.:)
i hope others will  add their thoughts as well.  We cannot run endlessly without recharging our batteries.
chin up wits end...you have found a supportive community  

best wishes,
NatR  
 
Réponse de KathCull_admin
13 mars 2015, 3 h 28

Hi Wits end
I would like to welcome you to the forum too. I am glad you found us. It's not easy to post to an online forum for the first time.


There is an article called Caring for Yourself One of the first statements is very much what NatR said, "Whether you are caring for someone full-time or even just occasionally helping out, caregiving can be mentally, physically and emotionally demanding."    


Oldbat started a thread The Long Haul. She says, “But sometimes, just sometimes, it all becomes too much to bear.”   


Are you able to talk with your mother’s healthcare provider? I am not trying to overwhelm you with links but one more, Programs and Services lists resources across the country - are there some in your area you could contact?


Katherine
 
Réponse de KCBJ
13 mars 2015, 3 h 35

Hi Wits End. I lost my mother in September at age 99. My mother moved in with me about 20 odd years ago. She was quite honestly domineering and the dementia didn't help any. As with you my life was put on hold. All i had was going to work. My only escape. if i didn't have my dogs i may have gone off the  deep end. I was basically hanging on for them.

I   was subjected to  verbal attacks on a daily basis. I dreaded weekends and vacations.  she even called the police because she claimed i stole her underwear. Frustrated and angry wasn't the word for it. But i stuck by her to the end. Having homecare last year that was with her all day and 5 hours on Saturday and  Sunday was a godsend. I had a break! I didn't know what to do with myself. Lols.

I don't know where you live but it sounds like getting homecare may also help you. It will at least give you a break. In manitoba the homecare is called family managed care. I would suggest looking into it. It sounds like you need an escape too. And keep sharing here. Everyone is great! 
 
Réponse de KCBJ
15 mars 2015, 15 h 36

ps. I just want to add that my mother fought home care of any kind. It took two years before she accepted one hour visits and she made it difficult. Extremely difficult! She disliked several workers wanting only me to come running home from work to do some minor bidding. I was and am very grateful to my coworkers and manager for their patience and tolerance.


As I finally put my foot down, mainly because I was so very stressed, she finally found a worker she liked. That was before we needed the extra hours. When we needed the extra hours and her health deteriorated more, I fould out about the family-managed care.


Please do yourself a favour. Don't wait too long. It takes a toll on you mentally and physically know matter how strong you are.
 
Réponse de JennJilks
15 mars 2015, 21 h 26

Wit's End, 
You cannot ever think a) you are alone and b) that your feelings are wrong and c) that no one else has fought with their mom at end-of-life care!

I'm with you, woman. I kept telling myself that I was an adult, trying to manage a mother who was not acting and making adult decisions.

I would suggest that you get a hospice volunteer in, if your mother won't accept help.
Put your foot down.

I have a client, age 90, who has various health issues. He told his wife that he doesn't need my to give her some respite. I told him I was there to make his wife feel he would be safe. He accepted that! We had a grand time. Being deaf since birth, I whipped out my sign language book and we had a blast!

Your mother needs counseling, for sure. But I bet that won't happen. She has no right to treat you as if you were a servant. She is taking your anger out on you. Many women, who have fought hard to be independent, contributing members of society, fight like stink to give that up. Some people simply cannot age gracefully.

Do you have a journal? If so, I'd suggest you write it all down. Your feels are not wrong. They just are. It's how you handle them that makes a difference. You surely need support. You deserve it.
Write it down here. This is a wonderfully supportive group. You will find that most of us have had similar stories to yours, in one way or another.

The other thing I used to teach my students was to use "I" messages.
"Mom, I feel angry and upset when you speak to me like this."
"I feel tired and frustrated and I need a break."

I gave up a great (newly renovated) house, found a  crummy job in a town near my parents, left hubby to sell the house, left behind my adult children, and a fabulous dream job teaching gr. 8 in a great school. My late mother asked if I'd made a mistake, when she denied needing help in her home. The place was filthy and she couldn't manage. I was working 62 km away teaching gr. 7/8 anger management students, one of which was on parole for assaulting a teacher.
I wrote mom a letter, suggesting that when she would be able to accept help to let me know. I will get in home care for her. We had a sit down. We sorted things out.

See? It feels better to vent! You will get through this. You will look back and laugh. When your mother passes, she will understand. I got this message in a couple of ways.
Anyway, I ramble. Somedays you just have to wonder what the heck the lesson is one is supposed to learn.

Take care.
Vent away! 

 
 
 
Réponse de wits end
19 mars 2015, 14 h 30

Hello everyone and thank you for your input.


Yesterday we went to the cancer clinic and now mom needs to go back on chemo.


 New problem


My aunt agrees that now is the time for the rest of the family including grandchildren who are adults to start taking a role with my Mom. I mentioned something in passing about now I have to have help with this and the response was *this is not about you *  That HURT. How do I not matter in what has been going on with Mom. I live her and am her caretaker. My sister says not to let things bother me so much......... what the heck do I do or say at this point so that I don't come off thinking part of this is about me.
 
Réponse de NatR
20 mars 2015, 17 h 46

Hi wits end,

i trued ie's to start a reply this morning but got side tracked;( so let me try again

its really hard when you the caregiver are trying to keep up to all the important treatments changes - and details. 
Its also a raw wound that caregivers have - every little pick or criticism feels so huge!  It's all too much and no one seems to understand how you feel!

unfortunately it's not always easy to figure out how to respond - but I want to tell you  that it is not out of meanness that comments are made ( not always) it's out of ignorance to the load you feel so heavy.

try and just fluff it off - and over time and conversation hopefully other family members will gain some insight into the caregiver role.

if you can take a deep breath and reminf yourself what a good job you are doing and that only you can know exactly how you feel, it might help.

that is why coming here to the forum helps you get out the irritations that often aren't understood by others 

i get it, and I hope it makes you feel better to hear that.
keep a cool head and keep writing;)
best wishes from one caregiver to another;)

NatR 👍

 
 
Réponse de wits end
20 mars 2015, 18 h 27

I appreciate any input that I can get. I guess that I am overwhelmed and need to take a short break before Mom starts chemo on the first of April. It is very hard to brush things off because once something is spoken it's there forever.


I am still open to how I can make those that have chosen not to take part in some of her care to really understand what goes on without making it about me and not just Mom.


Thank you


 
 
Réponse de KathCull_admin
20 mars 2015, 21 h 58

Hi
Words are very powerful. I have found that old saying, "Sticks and stones may break my bones but words will never hurt me," to be so false. 

It can be so difficult for others to 'get it' and often they don't realize the power of their words - especially when someone is tired physically and emotionally, worried and uncertain. 

Coming here is safe - and like NatR, KCBJ and JennJilks people understand and will support you. 

I look forward to hearing what you do for that important short break. You might want to share it on Sweet Escapes for Caregivers .

Katherine


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