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Caregiver fears, anxieties and guilt

Caregiver fears, anxieties and guilt

Posted by Lynn Marie on Mar 3, 2019 12:05 pm

Hey, This past few weeks has included a lot of “firsts”, including this post as I’ve never joined an online forum before. My name is Lynn and I’ve become the sole caregiver for my 56 year old mom, who was originally diagnosed with stage IV Metastatic Lung Cancer, but we just found out it is actually stage IV Metastatic Melanoma. Even though she was diagnosed in early January, has had pleurdesis and biopsies, has been to a neurosurgeon and has begun radiation on her chest and brain, we still don’t have a complete pathology and haven’t met with a medical oncologist to discuss melanoma. We have to wait until March 15th but we have our appointment with palliative care next week. To help with her financial circumstances, she moved in my apartment with me and I took a leave from my job to help with her pain management and to get her started on radiation treatments. I have two younger sisters but they can’t help due to work/family and schooling. My mom is single and, despite being an energetic, lively, and social person, most of her friends have turned out to be more work than help. We have a very small family .... all are totally dysfunctional or estranged. Mom gets bored easily because the tumor has effected her vision and she can’t follow complex tv shows due to her short term memory and confusion. The steroids for her brain tumour make her hypomanic. So she can’t stay still. She also can’t be left alone for very long... The truth is, even though I’m grateful that I have been able to take time to help mom adjust, I feel very isolated and I can’t really even grieve or show emotions. I often have really high anxiety now and she cries or expresses upset about me having to give up my job, my boyfriend, my friends. And she’s not wrong, I am grieving the loss of my life prior to her diagnosis, but I feel guilty for that given her illness. I think it would be easier if I had even a little bit of time for myself. At this point, I can’t really get more than and hour or two and everyone keeps telling me to take care of myself but how?? I have reached out to a social worker for mom, we plan to connect with wellspring and nearby hospice programming. The problem is that she wants me with her all the time. She is reluctant to engage in any part of this on her own... but I’m emotionally and physically exhausted. Mostly, it just feels good to write about how I’m feeling. I don’t feel like there is much that can be done to change our circumstance, so maybe I’m just complaining or venting. Thank you for the opportunity to share.

Re: Caregiver fears, anxieties and guilt

Posted by ACH2015 on Mar 3, 2019 2:41 pm

Hi Lynn Marie‍ 

I also want to tag Aly‍ and Brighty‍ into this post. They both have experience as caregivers and I'm sure will chime in with their personal stories and tips.

What you describe is very common in people caring for a loved one. Stress from isolation and a feeling of being trapped is unfortunately a very common part of the process.

I am glad to hear you've reached out to a social worker for your mother, but what about you? Social workers can offer you support as well. Knowing where you may be able to get someone in to look after your mother when you need to get away, offer counseling and just someone to listen to you and your needs.

You mentioned sisters as well. Any chance of tapping into their ability to free up some time for you while they look after mom?

Caregiver need care as well. You need diversion, your boyfriend and friends to help recharge your batteries and get away from stress for yourself.

Below, I've provided a link from the Canadian Cancer Society that talks about, among st other things - the importance of looking after yourself.

http://www.cancer.ca/en/cancer-information/cancer-journey/if-you-re-a-caregiver/?region=ab

There is also a discussion Forum here on the site dedicated to those Caring for Someone with Cancer. I've given you the link below. To access from the main site, click on Forums and choose Caring for someone with cancer.

https://cancerconnection.ca/discussions/viewcategory/35

You're not alone Lynn, we all need support here and its all about sharing experiences and getting information to lighten our load.

Keep well

ACH2015 - Andy.

Re: Caregiver fears, anxieties and guilt

Posted by WesT on Mar 3, 2019 2:44 pm

Lynn Marie‍ Thank you for signing up and asking questions.  Sorry to hear about your mother.

Although I have no personal experience as a care giver I will tag Aly‍, Lacey_adminCCS‍, jorola‍ and Cynthia Mac‍ who have experience as care givers and hopefully they can offer advice.

Good luck!

Wes

Re: Caregiver fears, anxieties and guilt

Posted by jorola on Mar 3, 2019 4:28 pm

Lynn Marie‍ I too am very glad you found this site. When I first began my role as a caregiver I was very overwhelmed and it did not take long before I was needing a break. It is good you are recognizing the need to step away for your own health. Now to help find you that opportunity. You mentioned reaching out to the social worker and that you have a meeting coming up with  palliative care next week. When is the date of that meeting? Did you discuss your need for you to have a break with the social worker too?
I get your other siblings have school/family but they need to understand the situation you are in as well. Even if each one committed to one or two 2 hr time periods per week, where they could be with your mom, I am sure you could agree that would help tremendously. Even if they did one each. They can also do other things to help such as baking/cooking meals you can freeze so you can save time that way. Pick up/do and bring back laundry. Pick up and drop off groceries and other errands for you. Often it is even trying to fit in those small errands that are the most difficult right? So there are other ways they can help. Teamwork, however you all as a family need to make that look, is your best friend in getting through this, together.
I am also going to link you the community resource locator to you. Click on that blue hyper link. This is to the home page for this resource. Enter in your home town and it can help find resources that may be of further help to you. Some are free and some are not however it may give you a starting point to locate some extra help.
I know you are concerned about your Mom and how she may react to getting help from someone other than yourself. Often this is the initial response but people do adapt more easily than people think. They do adapt easier the earlier other are brought in than if you were to leave it to much later down the road. In the end getting help will be the best thing for your Mom and you.
When you do get respite care make sure you use that time on you and not to do more caregiver work ok? Doing caregiver errands does not count! Go be with your BF, go spend quality time with yourself  - do whatever would make you happy, recharge your batteries and bring you some peace.
I encourage you to explore this site. It has much to offer with information and distractions too - some fun stuff not cancer related. Posting regularly also helped me. It was like a form of therapy. It allowed me to get what was in my head out of there and out into the world. If it helped someone else relate to it and/or if someone could help me with what I was struggling with then how could I ask for anything more. But if anything, like you said, just getting it out made me feel better. Please keep us posted. If you have questions, ask away. All of us here will do our best to answer or send you in the right direction. Most of all we will support you and walk with you in your journey. You are no longer alone.
Jodie

Re: Caregiver fears, anxieties and guilt

Posted by Brighty on Mar 3, 2019 5:55 pm

Lynn Marie‍  welcome to the site!     I'm glad you reached out to us for help.       I was a caregiver to my fiancé who had stage 4 Esophegeal cancer.     It the most challenging time of my life.      You can view my story in the "features" section..   Or I think it might be in the community news section.      The keys to surviving caregiving I found were: Number one, ask for help.       I didn't do that at the beginning and nearly had a breakdown.      It's too much to take on for one person.      Once his family stepped up and pitched in, I didn't feel so alone.   I was able to take time to care for myself too.      You can't care for anyone if you aren't taking care of yourself.     Don't be shy, ask for help from whoever you can get it from.   Be specific about what you need.   Meals, driving to appointments, or whatever it may be.     Take breaks.     You have to do that to survive.   Do something you enjoy, go out with friends, your boyfriend, treat yourself, get a facial, see a movie, whatever it takes to put a smile on your face, even for a few moments per day.     Have a strong support system in your life.     Let people in, confide in others, and let others be there for you.     Reach out and ask for help.      Keep your routines as normal as possible if you can.    Go to work, school or whatever......do your grocery shopping, do the mundane routine things.   It helps to feel like there's normalcy in your life.      And talk to a therapist, social worker,  family doctor, oncology social worker, whoever is availiable.      The oncology social worker was a great one for me.   She always made herself availiable to me.    Every hospital has one.     I spend countless hours in her office balling my eyes out and she was patient and caring.   She also referred me to whatever other  resources  that were needed to care for my fiancé.      Nurses and respite care or whatever other resources you may need.       Don't hesitate to lean on this forum for questions and support.   We are here to listen.     

Re: Caregiver fears, anxieties and guilt

Posted by Lynn Marie on Mar 3, 2019 11:20 pm

Thank you so much for your kind and detailed replies. I am beginning to seek out community resources and I do have a therapist ... when I can get some time to go. My sisters are helping in their own way. One of them is only a few months pregnant, has two sons and a husband and just started a new job not too long ago. She is not coping well with mom’s diagnosis and fears losing the baby. My youngest sister is finishing the last 2 months of her business degree at university. She’s helping as best as she can given her midterms and due dates. She has been granted extensions and special accommodations but the reality is that she needs to finish. Both of them check in on me and mom... but it’s really a reprieve that I need. What do people do if they can’t take time off work? I will need to go back, but I’m baffled by this process. How do people support someone they love that shouldn’t be left alone due to a brain tumour ??

Re: Caregiver fears, anxieties and guilt

Posted by Taja on Mar 4, 2019 2:06 am

Hi Lynn Marie‍ ❤

I can relate to a lot of what you are going through and what you are feeling right now. I am the primary caregiver for my husband, who was diagnosed with stage IV lymphoma back in Sept 2016. 

None of my family lives in the same province as us, and while his family does, he has a very small family so there were limited hands to help out and the time they were able to help out was even more limited. We actually had our friends help us out more than his family members. 

One of the things which annoyed me the most is having people ask/tell me: "Let me know how I can help". I didn't know what I needed help with. I didn't train for this. Getting groceries, cooking, cleaning, driving, picking up medication, mailing off all the crazy medical paperwork we had to do...etc. What I found helped is making a list of things of everything I have to do. From things that needed to be done on a regular basis to one off tasks. I jotted it all down, and then picked out the things I could get others to take care of vs the things I actually have to do myself because there was no other option (eg. working with my husband's employer for disability).

Another suggestion is don't be overly considerate when asking for help :) I would often think if it would inconvenience someone else if I asked for a favour, or try to decide if they would even be able to. Just ask. It may be that they can't, but a lot of time I was surprised that friends would be happy to shift things around in their schedule to make it happen. Sometimes this meant calling people with no notice to help out with something in an hour. 

Putting yourself first, and taking care of yourself is no easy task, and when I first started to do this I felt really guilty doing it. I learnt the hard way (on more than one occasion) that you have to. There were two times I ended up getting very sick, which meant I couldn't be around my husband as he had no immune system. That was really hard as there wasn't anyone else who could step in full time to help. 

Even though you may only have a couple hours during the day to yourself, those hours matter! Make them count, and do things you enjoy doing and treat yourself. Have a relaxing bath, go for a walk and grab a coffee, give yourself a manicure, read, draw, make a warm cup of tea and just chill, meditate, what a funny show etc. It will also help you feel that normality again. 

If you can also find things that you and your mom can enjoy together that is a huge win as it helps you both :) Something my partner and I did was buy a sample set of different teas at David's tea and every day brew a new tea to enjoy together. 

I also felt very alone throughout this journey and on top of that a loss of identity. You feel like your life has been put on hold and flipped upside down. You are suddenly no longer a daughter, but a full time nurse, you are not at work, so you can't identify yourself with your job title and instead are "unemployed". You're not a friend because you don't have time to be social. And there might be few or nobody you know who understand's your situation first hand. 

It's fantastic that you are seeing a therapist!! Keep talking on these forms as well. Whether for questions, or just to let things off your chest. To have your voice be heard, and to know that others understand what you are going through. The Cancer Chat at de Souza also had a workshop for caregivers. I am not sure how often it occurs but I found this really helpful to connect with other's in a live chat on a weekly basis. https://cancerchat.desouzainstitute.com/ 

In terms of returning to work, do you have the option to work from home? Could you go back part time? 

Re: Caregiver fears, anxieties and guilt

Posted by Lynn Marie on Mar 4, 2019 8:42 am

Thanks so much for your reply... your words reflect exactly my emotional experience. The question that bugs me most right now is “How are you doing?” And it is almost always followed by “please let me know how I can help”, but these are my fiends and co-workers asking and most of them don’t even know my mom. They are so well-intentioned, kind and compassionate. They are amazing, they genuinely care and they have been sending food, gift cards and useful gifts for me and my mom. I am a high school teacher and one of my students even made her two soft chemo hats before I took my leave. Part of my struggle, sadness and disappointment comes from all of my mom’s friends and our family. It hurts her (and me) that my friends and coworkers are doing these things for us, but hers have largely abandoned her or they say and do upsetting or hurtful things. I guess I would say that I have a ton of support outside of my mom’s cancer but it really wouldn’t be appropriate to ask my friends to stay alone with her. I need them for myself as well when I can get away... As a way to support us further, my friends have started coming to visit us and that seems to help as a bit of distraction for both of us. I’m working on getting used to the idea of bringing in PSWs for a break here or there and I’m going to head to wellspring this afternoon to see if we can register for some programs to help fill her/our day. I’m hopeful that she may meet some good and caring people that will be positive and supportive. As for my job, no I can’t do it from home. As a high school teacher my life was very full. I was scheduled to take 40 students to Italy over the March Break next week and I’m actively involved in school culture jnititiaves. Walking away from my coworkers and friends and students and all the meaningful work that I get to do has been very hard. I teach history and sociology/psychology/anthropology and I’m passionate about it. I know the job will be there when I get back, and people keep telling me that I will never regret being with my mom through this but it is still such a big change. It’s so hard and scary to go through. Especially when the doctors have said they fear that my mom may have a seizure or brain bleed. It’s a new week... maybe things will get a bit better. Thank you again for all of your feedback and advice. I’ll be sure to incorporate some of your ideas and look into more options- it helps so much!

Re: Caregiver fears, anxieties and guilt

Posted by dram on Mar 5, 2019 10:08 am

Hi I'm so sorry to hear about your mom's diagnosis.  It is a blessing that you can be with her at this time but I'm sure it's taking it's been very rough on you. I took care of my disabled brother for ten years after our parents died. I don't know where you live but have you looked into respite care? It's free in Ontario . One web site is www.ontario.ca.page/respite-care or by putting in "respite care in Ontario " in the search bar by your location will bring up other results, you just have to make sure it's a government site not a business that charges for their services. We received four hours a week for my brother from this service, they would pick him up and take him on outings . But the hours of service vary and the types of services.  This was the I only service we used.
Hopefully you can find 
someone there who can help you free up some time for a break.
bless you.

Re: Caregiver fears, anxieties and guilt

Posted by Lynn Marie on Mar 6, 2019 10:57 am

Thanks Dram, 
I'll check out the respite care link you suggested. Supports are slowly starting to fall into place and I'm learning that the more I ask questions and advocate, the more people/services know what we need. I went to a caregiver support group last night and that was helpful in unexpected ways. I thought it would just be cathartic (and it was) but I learned a lot and was able to share what I have learned in a short amount of time. Our meeting with our Palliative Care specialist is on Friday, so I'm hoping that we will have a clearer picture of what support might look like.  If not, perhaps the following Friday when we meet with our Medical Oncologist we will finally have some understanding of what we are actually dealing with.

I appreciate your message- thank you :)

Lynn

Re: Caregiver fears, anxieties and guilt

Posted by supportivewife on Apr 14, 2019 10:06 am

Lynn,
I came across your post today and can relate to so much of what you are saying. My husband was diagnosed with stage 4 non small cell lung cancer in July 2016. I am a teacher so I was off work on summer break and was able to attend all appointments and offer emotional support as we dealt with the shock of the diagnosis. My husband has never smoked but played music in a band for years in smoked filled bars and halls. His cancer was caused by second hand smoke. We have 3 children, age 20, 18 and 11. 

His diagnosis came as a complete shock. Other than him being in pain, he did not look sick. Come fall, he was able to stay home alone and I took the odd day off for appointments. Our oldest children were 18 and 16 at the time and where able to help provide child care to their younger brother. Outside help was not needed.

The past 8 months have been awful. In September, we found out that the cancer had spread to his back. He had one radiation treatment which accidentally hit his oesophagus making it impossible for him to eat or take pain medication. He was hospitalized for a week. I took sick days and spent the week at the hospital, 45 minutes from home. This happened in the second week of the school year so I was prepping from a distance and arranging child care for my youngest. (Our 20 year old is in university 3 hours away, the 18 year old is in grade 12 - on lots os sports teams = practices and games). My mom is my regular support person. However my dad had been hospitalized a week prior with heart issues and was waiting for surgery so she was unavailable. 

When my my husband was released from the hospital, I returned to work. He was told that eating would be difficult for about 2 months while the oesophagus healed. He lossed 10 pounds in the first month. This continued for 4 months! He lossed 40 pounds in all. Finally in December, I asked for a leave at work. My husband was admitted to our local hospital the next day. His pressure was 90 over 40. The doctor gave me that look. It is the cancer and he is nearing the end. I insisted that it wasn’t. We are dealing with the consequences of the radiation damage which is making him unable to eat. In the hospital, he received hydration IVs. He was released 10 days later. Christmas was awful. Our daughter came home from university and saw how frail dad had become. She cried endlessly in her room and didn’t want to go back to school. The youngest asked questions about dying and Heaven. The middle child, said nothing and developed shingles from the stress. I was like a ping pong ball, bouncing between the four of them, offering support. Meanwhile, I was a wreck myself and cried silently every night while my husband moaned in pain beside me.

In January, my daughter returned to university and the boys returned to school. I got a doctor’s note for situational stress disorder and stayed off work. My husband finally started eating pudding, jello...without it sticking in his throat. He weighed 90 pounds. He has now reached 101 pounds, gaining a pound a week for the last 8 weeks. He rests on the couch and holds my hand. If I break the hold for a second, he asks where I am going. I answer to the bathroom and he half smiles. I am exhausted.

I am fearing September as my sick days will have expired in the summer and I will have to get back to work. Our middle child starts college in the fall so my helper at home is leaving. My husband loss a lot of muscle mass and is weak. I worry that he may fall. I pray that he continues to gain weight over the next few months. I fear him needing me at home. I could apply for caregiver leave here in Canada but it pays 55% of your salary. Not doable, especially with 2 kids in post secondary. 

My my mom is my back up person but she still works herself. she has a couple more years before retirement. (She got married and had me at age 18). I am 45 and have 8 more years before retirement. I am overwhelmed with anxiety.



 

Re: Caregiver fears, anxieties and guilt

Posted by Cynthia Mac on Apr 15, 2019 11:06 am

supportivewife‍, your stress level is quite apparent in your post, and I wish there was more I could do to help.

You have been carrying this situation as much on your own as you can, however, I’m concerned that you’re running on fumes, when you need gas. What are you doing for self-care? Self care is what “fills our tank” and makes it possible for us to keep on giving.

Sometimes, when you step away to do something outside of the disease, little epiphanies happen: While laying back with your head in the sink at the hairdresser’s, you might see a way to get to caregiver leave, or a work-around for your sick leave expiring. Or, maybe have someone come in during the day to care for your husband so you can keep working. Sometimes focussing on a mundane task will give our brain enough of a break to let creative solutions “pop.”

Have you contacted your local cancer centre or homecare providers? They might have some suggestions for you. Or, the cancer hotline at 1-888-939-3333.

You’re doing great work, and it’s obvious that your husband loves and appreciates all that you’re doing. 

 

Re: Caregiver fears, anxieties and guilt

Posted by butterfly kisses on Apr 15, 2019 3:42 pm

I came across this post today and can totally relate.  My mom was recently diagnosed with stage 4 lung cancer while in hospital with a pain crisis.  It felt like forever getting some answers and direction.  I stayed full time in the hospital with her and though she is now home, she still needs full time care.  She doesn't want to be left alone in a room at all ever, this means even sleeping on the couch beside her.  We have a palliative team but it isn't the kind of support where we can leave the home.  She needs help to answer questions and understand what is being said.  
People ask what they can do to help, or "you are taking care of your self too right?"  But most people don't seem to understand that I am trying to take care of myself but sleep or sitting with her so i can go do something is what i really need and no one can really help with that.  I can and do take walks or try to nap when family members come to visit, but it is a marathon and I feel like I am sprinting.
It does feel like a lonely place, but I find comfort here knowing that there are others here that understand.

Re: Caregiver fears, anxieties and guilt

Posted by Cynthia Mac on Apr 15, 2019 5:14 pm

butterfly kisses‍ , what is it about the task of sitting with your mom that is beyond the capability of another person? I’m sorry, perhaps I’m not as familiar with your mom’s situation as I ought to be. Is it your mom’s comprehension issue?

Are you able to do some self-care while you are with your mom? Video games or puzzles can provide a mental escape, even though you’re still in the room. Audio books could maybe help, too.

Re: Caregiver fears, anxieties and guilt

Posted by butterfly kisses on Apr 16, 2019 7:53 am

Cynthia Mac‍, I didn’t share my story here bc I was just empathizing with this story.
my mom isn’t comfortable with just anyone being with her and she does need some assistance with toileting making the choice of person if I were to leave the home tricky. I have been using podcasts etc with earphones and books during resting times. It has helped

Re: Caregiver fears, anxieties and guilt

Posted by CharlotteS on Apr 17, 2019 12:42 pm

Hello Lynn Marie‍ .  My heart goes out to you. 
Let me introduce myself to you. I have a wonderful silly husband who has renal carcinoma that has traveled into his bones.  We have been on the Cancer Trail since August 15, 2018.  I was lucky enough to get him on a trial of Immuno Therapy. It is working. Wow!...but as with anything in the land of Cancer....there are consequences.  First the drugs blew up his Thyroid.  So now he is on hormones, that our wonderful Internist is trying to balance.  Hard to balance when the hormones are based on weight and he is on Prednisone because of the Autoimmune Responses triggered by the Immuno Therapy. Seriously?????  I digress.  Forgive me.  That seems to happen a lot lately. hahahahahaha The next Autoimmune Response presented itself as Osteoarthritis in his spine and hips. Very painful. Did I mention that each time we have an AI Response, he must be removed from the Immuno Therapy until the Doctors can get things under control. We are now in the middle of April and he has not had a treatment since January 23rd, 2019.  Scary. He is being weaned off the Prednisone but it has to be very slow or he goes off the rails again and we have to start all over again. Prednisone is a wonder drug but the consequences are interesting to say the least.  Huge weight gain.  Constant hunger.  Mood swings.  An enormous amount of energy and then the crashes.
We have no family here in BC except for our daughter and her family who live on the other side of the Province.  It takes us 7 hours and 3 mountain ranges to cross over to her.....or her to us. Your comment about whenever you do actually have someone show up to help......you feel like your walk has turned into a sprint because (I'm only guessing) you want to get everything done and not be an inconvenience to whoever is there to relieve you. sigh...……. Yeup. I get it.
I will not offer up any suggestions on how to look after yourself.  You know you have to do that.  You are no good to anyone else unless you are good to yourself first. I m sure you have heard that phase a few times. Talk to us on this site during those quiet moments.  Sleep when your Mom sleeps. We are here for you.  It doesn't sound like much but it sure does comfort me to read how others are feeling the same "fears, anxieties and guilt".
 

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