Posted by Lynn Marie on Mar 3, 2019 12:05 pm
Posted by ACH2015 on Mar 3, 2019 2:41 pm
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.
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.
You're not alone Lynn, we all need support here and its all about sharing experiences and getting information to lighten our load.
ACH2015 - Andy.
Posted by WesT on Mar 3, 2019 2:44 pm
Posted by jorola on Mar 3, 2019 4:28 pm
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.
Posted by Brighty on Mar 3, 2019 5:55 pm
Posted by Lynn Marie on Mar 3, 2019 11:20 pm
Posted by Taja on Mar 4, 2019 2:06 am
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?
Posted by Lynn Marie on Mar 4, 2019 8:42 am
Posted by dram on Mar 5, 2019 10:08 am
Hopefully you can find
someone there who can help you free up some time for a break.
Posted by Lynn Marie on Mar 6, 2019 10:57 am
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 :)
Posted by supportivewife on Apr 14, 2019 10:06 am
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.
Posted by Cynthia Mac on Apr 15, 2019 11:06 am
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.
Posted by butterfly kisses on Apr 15, 2019 3:42 pm
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.
Posted by Cynthia Mac on Apr 15, 2019 5:14 pm
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.
Posted by butterfly kisses on Apr 16, 2019 7:53 am
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
Posted by CharlotteS on Apr 17, 2019 12:42 pm
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".