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New to the site

New to the site

Posted by Dr Hook on Feb 17, 2019 3:47 pm

I have been the sole caregiver for my husband who was diagnosed with multiple myeloma 2 years ago.  He has limited mobility and I have taken on most of the responsibilities of running our household 

i have Have been dealing with a lot of frustration and anger lately.  

I am am hoping it’s due to the fact that the terrible weather has left us pretty housebound over the last couple of months
 

Re: New to the site

Posted by ACH2015 on Feb 17, 2019 4:55 pm

Hi Dr Hook‍ 

I am going to tag AlyBrighty‍ and jorola‍ here as well. All have been caregivers themselves and I'm sure could offer some of their suggestions to you from first hand experience.

Being a sole caregiver can have its frustrating moments. Winter and being stuck inside adds to those frustrations for many of us. 

Do you have the ability to get out periodically yourself for some away and down time? We often forget the importance of doing something for ourselves. Caregivers need distraction and some enjoyment to recharge our batteries.

Short trips to share with friends (a coffee, lunch) can offer that little break we need. I understand your needing to assist and be there for your husband, and wonder if there is anyone in your family, circle of friends or community that could be the caregiver for short periods of time.

Another thought, is there a community center near by that offers different types of activity? An indoor walking track, library, accessible movie theater, just some little thing to get you or both of you out for a change of scenery.

The link I've shared below is from the Canadian Cancer Society and it talks about the importance of looking after yourself as a caregiver.


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

We can all get into a rut, and need to change up our everyday. Winter is a tough time for me as well. Thinking outside of the box has helped me to keep motivated.

I hope you find a way to get through this rough patch with some suggestions.

Keep well

ACH2015 - Andy.

Re: New to the site

Posted by Elsie13 on Feb 17, 2019 4:58 pm

Hello Dr Hook‍  .  Glad you have found cancerconnection.  Sorry about your husband's illness and sorry too about all the frustration you are feeling.  I think the long winters we have here could be part of it, but also, two years is a long time for you to be doing all this care-giving!
  Perhaps Petesmate‍ and Irene S‍ will say hello as they know something about this cancer type. 

There are some myeloma discussions: https://cancerconnection.ca/discussions/viewcategory/71  and caregiver discussions: https://cancerconnection.ca/discussions/viewcategory/35  that you could look at. 

Re: New to the site

Posted by jorola on Feb 17, 2019 6:11 pm

hi Dr Hook‍ 
Welcome to the site and thank you for being open about how you are doing right now. I remember having the same feelings. I am sure you also feel bloody exhausted and just want to spend a few days hiding under some really fluffy and fuzzy warm blankets. But you get up every morning. You do it out of love, commitment, necessity and yes responsibility. Doesn't mean that you don't have moments you want to go on strike, let out a scream of frustration, breakdown and cry your heart out. I know I felt that way. I think it  is normal to feel that way. I have heard many caregivers say they felt similar. We are human after all. We often have to work, pay the bills, clean the house, cook, take care of all the medical appointments, medicines....all things medical really. The whole time we are doing this we are watching the we we love suffer. It can be truly heartbreaking. We do it because we want to but it can become all overwhelming, exhausting and emotionally draining. It can feel like we never have time to breathe let alone take time to even go for a 1 hour coffee with a friend. When I began to feel this way I began forgetting things, important things like picking up medications, medical appointments for myself, often late for work, disorganized at work and I was emotionally fragile. I would cry at the drop of a hat or snap in anger for the littlest reason or sometimes no reason at all. I never meant to act this way, it just happened before I could catch myself. I didn't start out on a good foot either on this journey. I was devastated when my husband was diagnosed with stage 3b lung cancer. His initial prognosis was very poor. My past experiences with immediate family members and lung cancer always ended in death and quickly.
So I was a snowball rolling down the biggest ski hill out of control, heading for disaster. I needed to do something so I did and that's then I turned things around and life was so much better - for me and hubby. Heck everyone I interacted with. I wish I knew of this site and all the resources it offers back then as there are many that can help you.
First things first, again you are human and what you are feeling right now is normal for the situation you are in but there are ways to make it better.
Second get help. That comes in many forms. Whether it be some help with house cleaning, respite care, support groups, travel assistance,or you name it it is often there and can be free or to little charge. I am posting a link to the Community Services Locator http://www.cancer.ca/en/support-and-services/support-services/find-services-in-your-area/?region=on. This is to the home page for this resource. Enter in your home town and it can help find resources you are looking for. I often tell people this is not a time to be shy ok? If you have tried doing it on your own and you are feeling as you say, I would challenge you to say it is not working so please try this. Also please talk to family, friends, local services such as volunteer groups and church groups that have not registered with the Community Services Locator. If you can't find anything on the locator or have difficulty using it please call the number on its main page. Someone can help you by phone. Cancer Connection can really help connect you but so can your husbands treatment clinic. Often there are social workers there. Utilize them. Let them know what is going on. No one knows your community and its resources better than them.
Thirdly once you start to get some help lined up time to start to getting you - you and hubby. Get out together to do NON cancer normal things together and each of you also do normal things individually. Get him to go out with his friends. If him leaving home is difficult have him invite friends over then that is a perfect opportunity for you to meet a friend yourself.
Finally, but far for last, I always say, if you are trying many ways to make things better and despite this you still feel angry, sad, unattached to anyone, uninterested in anything, please speak with your doctor as you may need medication, counseling or other assistance with this. I myself did this. I have chronic depression but it had been stable for years. My husband's diagnosis shook me to the core. I need extra help professionally including adjusting my medications to get through this. I encourage people to speak to their doctor and let them and their medical expertise along with your participation determine what is best for you.
This all doesn't happen overnight. The first step you have done, you reached out. The best move you ever made. Please use the resources available to you. You deserve them and have the right to use them. We are always here to listen and just talk too. This site is all about people supporting people. It is an amazing place with amazing people. Never hesitate to ask questions here ok? I have gone on and on here but that is I have been there and I want you to get the help and support I did so you too can have things turned around. That way you can breathe again, find moments of happiness gain and most of all spend real time with your husband and not just cancer time.
I hope you find these replies to your post helpful. Please keep in touch ok?
Jodie

Re: New to the site

Posted by Brighty on Feb 17, 2019 6:42 pm

Dr Hook‍ welcome to the site!!! I'm do sorry gor what you are going through.    Everything  ACH2015‍  and  jorola‍  said was dead on correct.     I was a caregiver  to my fiance  who had esophgeal  cancer.   It nearly destroyed  me .   I was doing it on my own and couldn't cope.    I just about had a complete  breakdown until my mom spoke up on my behalf because I was too shy to ask for help.   She got his family to step up and help out .   Things became a whole lot easier  when done as a team.      Also emotionally knowing I wasn't completely alone.    My fiance was not an easy patient either.    He listened to nothing I said or anyone  said.   Including the doctors.    He shut everyone out including  me.   He just totally shut down.     I was lucky I had my family  to lean on and I was in therapy 5 days per week.    I was lucky to have work as a distraction from cancer too.   I continued to exercise  and find distractions wherever I could get them .      It was the only way I could survive.     I had to have normalcy in my life or the situation  would be unbearable. .    So if u can.. ask for help.   Anyone you can trust that can help.. take it.   Distract  yourself whenever and however  you can and reach out to others.   Don't try and do this alone .    No one can do this alone and keep their sanity.    I'm glad you reached out to us.    We are here to listen.     Let us know how things are going.