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Frustrated...how do I cope?! 
Créé par BlackCat
22 août 2014, 1 h 04

Hello, I am fairly new here, and I really need some advice and support from people who understand what it's like being a caregiver for a loved one. My mother was diagnosed a year ago with stage four lung cancer. I moved in with her to help. Her diagnosis came four months after I was discharged from a psychiatric hospital. I had admitted myself, and was working on maintaing my emotional stability.

When my mom was diagnosed, I felt that a part of her already died. She is not the same person anymore. The cancer hasnt spread to her brain, but I understand there is a mental decline. My mom has become cold and hurtful. She mocks my mental health issues, and says some pretty nasty things about me to family. My sister and I have a horrible relationship, and my mom is gossiping about me to her.

I feel very unappreciated, and unliked. I feel frustrated with her lack of memory, and her behaviour, but U dont want to upset her by bringing it up.  How do you all cope?  
 
Réponse de jorola
22 août 2014, 2 h 30

Hello Blackcat,

I am sorry to hear of your mom's diagnosis and the struggles you have been facing. My mother in law's cancer did go to her brain and it changed her dramatically. SHe was especially mean to her husband. I saw how her comments used to hurt him so badly. We all tried to keep in mind that it was the cancer and the medications (she reacted badly to the steroids - caused further psychosis) but sometimes especially when she was really on a roll it was too hard not to take it personally. We tried to care for her in shorter shifts because she could wear you out so quickly. Do you have anyone else who can help, give you a break?

I suffer from chronic depression and when my husband was diagnoised it was the lowest i had been in 10 years. Seeing my dr was critical. Are you still seeing someone? are you able to get away for appointments if you need to?

Sorry for all the questions. I just really recommend you make sure you are still doing what you need to take care of yourself. This is so important to be able to handle all the hard things being thrown at you.

Everyoneon here is very supported and helpful so please vent away on here. This forum has really helped me.
 
Réponse de BlackCat
22 août 2014, 15 h 17

Hi jorola, thank you for responding.
 
 I dont have any help. My mom refuses to allow any community assistance programs into her apartment. Being a heavy smoker, the walls are yellow and the place smells. I am currently on disabity, so I am home with her all day,and night. My sister has 2 kids, and a full time job, so my mom gets mad at me if I suggest that she help. My mom thinks I should be able to do everything for her,
but with my illness (depression, ptsd, agoraphobia) its very hard and exhausting. My mom has 4 sisters,who I have occassionally asked for help, but since one of them accused me of shirking my responsibility, I havent contacted them. 

My sister is a sociopath (criminal history, sleeping with married men...even faking cancer), and can be charming one minute, and turn on you the next. Ive learned to deal with her, but now that my mom is sick, she is bonding w
with my sister by trashing me and critisizing everything I do. If I make a mistake, or forget to do something, my mom tells her, and my sister says she deserves better. I feel like I cant win, and I have no one to turn to, who I know I can trust. I do have my therapist, but I feel the need for more contact, more support. My depression makes me want to just hide away, but I want to get better and deal! 

I feel very alone, and like everyone thinks I am doing a horrible job. I try my hardest to take care of my moms needs. Making sure she eats or drinks, takes her medication etc. Asking about her symptoms,to see if we can do something more for her. I cook, walk her dog 4 times a day, wash her back, give her massages, run her errands, buy her smokes, do the grocery shopping, take out garbage, feed her dog, and get all her medications. 

 
 
Réponse de KathCull_admin
22 août 2014, 15 h 57

Hi, 
Welcome to our community BlackCat. I am glad you found us. You will find this is a supportive, caring group of people who understand.

It’s good you see the mental changes in your mom as part of her illness - but it still must be hard. Have you had a chance to talk with the doctor or nurse who are caring for her? Does someone from the healthcare team visit her at home?


I understand you want to care for your mom at home and I can understand why she might not want other people in her home.  But do you think you can safely do this alone for much longer?  It sounds like you would need superhuman strength - both physical and emotional - to care for your mother and her needs as well as your own health needs and the dogs + all the everyday things in life.  Caring for yourself was written by the healthcare team of the Canadian Virtual Hospice. You might find it helpful.


Do you have friends BlackCat who support you? Is there any way other members of the family might be able to support your mom and you?


Katherine
 
Réponse de jaindough
22 août 2014, 16 h 57

Hi BC,

I'm sorry that you are having to cope with the illness of a loved one and also havingto deal with additional emotional difficulties surrounding that. I, too, recently took care of my mother at the end of her life and hada great deal of emotional difficulty in doing so, so maybe I can offer you a word of comfort or two.

I spent two and a half months tending to my mother as she was in the end-stages of lymphoma which had spread to her brain. She was no longer able to walk, had difficulty seeing, reasoning, speaking, feeding herself. In addition, she had become very aggressive and mean with me, due to the nature of her brain tumours. I know how horrible it feels to have someone you love tell you incredibly mean things. Please do not take it personally. Remember that your mother is ill and perhaps her illness and/or treatments are having an effect on her cognition.

The most challening emotions I dealt with were a feeling of isolation (I left my husband and 3 month old in order to cater to mom in our remote hometown 8 hrs away) and a huge feeling of resentment. I really resented my mother for treating me horribly when I had put my life on hold just to be able to take care of her. I resented being alone in tending to her needs (most of my family are deceased, and the others did not bother) and I resented having to leave my baby in someone else's care so that I could tend to my mom.

Your situation is a bit different. You have a sister who is also tending to your mom. Try to erase the drama surrounding that. If I were you, I would take shifts with my sister in tending to mom. In that way, you do not have to be around when your mother and sister are together and this might reduce feeling like they are picking on you as a team.

Also, you will likely reach a point where you will no longer be able to tend to mom on your own or without outside assistance. My mother really laid the guilties on me when I wanted her in a palliative care home and all she wanted to do was go home. She downplayed how debilitated she was and made me feel like I was pawning off caring for her onto someone else. It truly made me question my choices, even though I knew she needed far more help than I could ever offer. Remember that you should be a priority in all of this and make sure that you are tending to your own needs (physical, mental, spiritual, emotional) as well.

Best Wishes,
JD 
 
Réponse de jorola
23 août 2014, 0 h 42

Hi Blackcat,

I understand the want to hide yet life not letting you. once you start to give in to that want it is very hard to get out of that rut again. You are doing right by you not to give into this. I am glad you still have a therapist to talk to but your right a person needs more of a support network that just a therapist. Hope we can help there but it would be good for face to face support too. Are you able to join a support group whether it be a mental health group or a caregiver group? it would be good for you to get out and meet others. try not to let the words of others affect you so much. I known somtimes this is hard sometimes but believe in yourself and the work you are doing to help your mom and yourself. Your actions are stronger than their words. You know you are doing what you can and let their words run like water off a duck's back.

“Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.”
― A.A. Milne author of Winnie the Pooh
 
Réponse de NatR
23 août 2014, 4 h 10

Welcome to the forum Blackcat,

everyone has has welcomed you and given you some great advice.  I heard a radio program this morning about the work caregivers do - and that the best advice someone had been given was to be resilient - and that is what caregivers need to be.  They have to stretch their energies and brains some days - and other days other challenges appear - it's like carrying a big toolkit and pulling out whatever is needed for each day

sometimes it's Patience , sometimes it's Endurance, sometimes it's comedy, and each day can be different.

as a caregiver, personal support worker in long term care - I got accustomed to being sworn at, yelled at, spit upon, and often this happened in front of visiting family members who must have wonders what kind of care we gave!  It made me feel badly, but I knew the residents who spoke this way were not really in their right minds.

we learned to explain to visitors that everything was okay, that the resident was confused

but when this happens and you are hearing horrible words from your own parent or other loved ond - it's not easy to take.

here you can vent and share and someone will respond.  We all have different experiences but we all are supportive.  We are here to listen and help you get through the difficult times.

please keep posting and hopefully you will be able to step back a step or two from the difficult comments and barbs.

you are doing what you feel is right, and we are hear to listen and make sure you don't feel alone.
sending you a hug,
natR :)  
 
Réponse de BlackCat
24 août 2014, 13 h 28

Thank you for the responses, I appreciate it!  
 My sister doesn't help, and my mom says I should be able to do everything myself. It sucks to do so much work, and not be appreciated. 
 
 I will see if there is a support group for caregivers in my area, this was a good suggestion! 
 My mom seems to be declining the past week...sleeping all the time, nauseas, not eating much. She's also in a lot of pain recently. Its hard to watch someone slowly die. I will look into having someone come to see her once a week or so...thank you again for the suggestions and advice.
 
 
Réponse de oldbat
26 août 2014, 23 h 34

Hi Black Cat,

Just joined myself and can certainly relate to everything you're going through.

I understand about your mother's reluctance to admitting "strangers" (support" workers to her home.  Deep down she probably is terribly afraid of what's happening to her, and doesn't want anyone "outside the family" to see her in this condition.  Could you explain this to the social workers who, in my experience, are virtually unshockable?  Position whoever comes as a friend of yours, who is coming to help YOU.  She may not like it, or them, but if they make her (and you!) feel a bit more comfortable, she might just concede!  And that would certainly help you.

I also understand, and sympathize deeply about your sociopathic sister.  I have two step-daughters who are the same.  Do nothing for their dad, let me handle the whole load and then bitch about "all the money you must have" when I take the one holiday a year essential to my sanity - what's left of it after three years of this!  Not much you can do to change her, as I'm constantly being told, you have to work on ignoring her vile behaviour - something a good counsellor/therapist will help you with.  That's what I'm doing.  It's taking time, but hopefully I'm getting there!  You can, too.

Like you, I have clinical depression, PTSD and am also handicapped.  Because of this, my wonderful husband, brain-damaged from a catastrophic stroke, is in a long-term care home.  I am not only his sole care-giver, I am also his sole support.  trying to take care of us both on Canadian government pensions!  Yup, I'm certainly raking it in, ladies! And I have no family to turn to.  Without the help of social services, subsidies and therapy I would not have survived.

Friends suffer from empathy-overload and tend to fade away after the firt year or so.  There's no money even for movies.  So you learn to love Netflix and your local library and, of course, the web - without which none of us would be on this site! 

Don't hide away.  Youl are not alone.  Keep coming back here.  I plan to.  It really does help to know you're not the only one going through this.

j 
 
Réponse de NatR
27 août 2014, 0 h 07

Hello to you J, and Blackcat,

welcome to the forum.  Glad you can share with Blackcat your story, it helps to have others who understand.

I hope you will both feel welcome and supported by the group here:)
sending you both my best wishes this evening,

its a long and winding road to caregive, support and do it day after day.
the more we share with each other - the more we understand and support each other.
it sounds like you have had more than your share to handle ... glad you found the forum.
sincerely,
NatR


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