Share this:
mnina
@mnina

Posts: 34
Joined: Jul 25, 2017

Caring for Husband with terminal Lymphoma

Posted by @mnina, Aug 6, 2017

Hi Group, This is my first connect. I have been caring for my husband since 2014. He was given a short life expectancy in 2015 and surpassed the date.
Physically he has his ups and downs and mentally, is where the greatest challenge for me lies. He has become very self absorbed, angry and bitter at the world for the most part. I have organised counselling on going since 2014 and he’s on anti depressants. I am his life coach at times, among the other carer duties. I find myself so drained, mentally and emotionally and that is what is taking its toll on me physically. Family are not nearby and when they come to visit, they stay the night causing more work for me. Although this morning , I stood up for myself and spoke my truth. His brother is coming to visit for a few nights. I said cook for yourselves and clean up after yourselves, now that you are feeling better, you can do that. He is on a new chemo, right off the trails and has energy for about 4 hours a day. He gets treatment once every 3 weeks, On the week he gets treatment, I spend a lot of energy caring for him, the following week he feels better and wants to go do things, which is great. Although, not with me. I can understand we need time apart, for sure. But it has developed into a cycle of Being a Carer only. To get him to do things around the house leads to an argument. I am grateful to have a counsellor from the Cancer Council but its the day to day living that is very difficult. His cancer flares up randomly, just when i start to apply for a part time job somewhere, something happens at home. I hope the medical community understands all the ramifications that come with living with cancer, with long term terminal illness. As a carer, I have never been more tired daily, in my life. I thought the first few weeks after childbirth were the most exhausted Ive ever been but this doesn’t compare. Its hard to find joy or any happiness with him. I look for it with my friends and family , when I do have contact. You see, we live in the country about 3 hours from a major city. The house is going up for sale, next week, (more work for me), so we can move back to the city and closer to his family. Thank you for giving me a place to say whats going on. Alexa

REPLY

Hello @mnina Nice to e-meet you here, Alexa. Welcome to Connect! I am glad you found us. Here you will find fellow caregivers who enjoy listening and sharing experiences. I am Scott and I was my wife’s caregiver for 14+ years as she fought brain cancer. I found Connect when I was feeling incredible isolated by my caregiving duties and, like you, was constantly exhausted. I can understand and relate to so much in your post! I. too, lived almost every aspect of caregiving you related! You are amazing to me!

One good thing about Connect is we caregivers can realize we are not the only ones going through this, which at least to me, helped me cope. My wife, at her diagnosis was given 7 years and fought her grand battle for over 14. When she was prescribed home hospice they said it would be less than six months and she battled on for over 14 months. She was a heck of a fighter!

Caregiving is truly a grueling regimen for which you get no training, no employee manual, and high expectations that you can ‘do it all’. I like to say try and remember Superman and Superwoman only exist in the comic books, so know you cannot do it all! As a male I don’t know about childbirth, but I can say with 100% certainty I, too, was never, ever as tired as I was while a caregiver!

It is very challenging to deal with the daily changes that come with a patient’s condition, especially when mental and psychological changes occur rapidly and often. That was very hard for me to deal with in my wife’s case for sure, so I know what you mean about the daily surprises of how things are going to go!

I congratulate you on speaking your peace with visitors! It is a tough one — I had several of my wife’s family members who would come to ‘help’, but then really only came to observe, critique, and actually not help. It is tough to be welcoming when you see more work coming and you are already stretched to your limit! Then again for all those years neither of my sisters ever even set foot in my home, nor sent a note, card, or called.

I fully agree with you the medical profession needs to be far more aware of the ‘costs’ of caregiving on caregivers! I am still trying to do all the medical appointments I need now for myself due to all the ‘deferred maintenance’ on myself that simply had to be ignored while I was caregiving, Plus our house became a shambles due to the fact cleaning, organizing and maintaining it all flew out the window due to the 24/7 demands of caregiving.

I am so happy you found Connect and I hope you continue to come here for support and to vent. Caregivers need a safe place to speak their peace and get things off their chests and this is a good place for that!

I struggled with trying to understand and cope with the intense and very different lifestyle I had to live as a caregiver. Whenever you have time again, we’ll enjoy hearing from you again! The other good thing about Connect is many caregivers have learned many tricks and tips of how to do things and we love to share if there is anything in particular that is vexing or seems impossible.

Since no one has invented a caregiving magic wand yet, I can only send you strength, courage, and peace!

Thank you for your words. They were very helpful. I think this online forum will help me to share this journey which tries my patience and affects my confidence. Just to know that we don’t have to be Super People of any kind, is a relief. Sometimes the demands of caring, running a house and having some kind of life outside is challenging beyond my understanding. I really could relate to ‘deferred maintenance’ as I recently attended an appointment for myself with an eye specialist that I had been postponing. It felt almost like a treat to be there, I know that doesn’t sound well balanced. I have some work to do in that area. As I mentioned, I am moving us forward to sell the house and he agrees it needs to be done but its an argument every step of the way as far as decluttering and beginning to pack away. I believe that is what is vexing me at this time. Once again, showing me , my expectations need to be adjusted. My faith has grown, in that I continue to Let Go and Let God and I continue to let go of my vexing, knowing, at the end of the day, it will somehow work out. When he was first diagnosed with his relapse in 2014, I put all my energy into doing whatever it took to support him, the nurses and the doctors. Going to the hospital daily with homemade food, helping the over worked nurses, changing bedding , walking him, bathing him, helping him swallow a dozen pills without any salvia in his mouth due to the multitude of additional drugs going through multiple IV’s. Grabbing a wheel chair, when allowed, to take a joyous trip, outside into the healing fresh air. The joy of a simple ice cream. All those trips to emergency in the middle of the night with high fevers. They knew us well there. It had become our world. Following Directions and supporting and encouraging my husband to Follow Direction. Now, my energy levels are not what they use to be. The mental and physical fatigue is the hardest. I look for small joys, glimpses of moments of happiness. To relax and smile. Knowing that it is my energy , motivation and follow through thats going to get us through. Yet, I rely completely on my relationship of a loving God as I understand Him. Every day, I ask for help and direction. When he was diagnosed as terminal, I thought and believed God would give me all the strength and wisdom to walk this journey with him. Afterall, I thought, this is a sacred journey. Its official , according to the medical team, he’s close to passing over. And its a sacred privilege to walk closely with someone who is just about to go and meet His Loving Maker. I never thought it would last this long, I never realised the dark head spaces that my husband would be wrestling with and taking out on me. I didn’t think it would go on and on. Live each day gratefully, they say, try telling that to someone who’s identity and self worth was in his job and the material possessions he owned and places he could travel. Try acceptance, living life on life’s terms, finding things to be grateful for, that is what I have been taught. Although I tried to teach and encourage that with my husband, as the saying goes, you can lead a horse to water but you can’t make him drink. So I let go again. Every day, I let go in some way. and focus on what I can do. I am currently thinking of taking a little extra money and driving to the city for some ‘me time’. Its a thought, now with the preparation of selling the house, I wonder just hoe I will do that. Asking God for direction, not giving up and finding a way, somehow. Some say, put the thought out into the universe, have faith and watch what happens. No one really understands what its like to be a long time career but another carer. I hope the doctors read our feedback and the nurses. Integrated medicine can help with stress relief, meditation (prayer), massage, filing personal joy, somehow in this unpredictable roller coaster.
Thank you, Mnina

@mnina

Thank you for your words. They were very helpful. I think this online forum will help me to share this journey which tries my patience and affects my confidence. Just to know that we don’t have to be Super People of any kind, is a relief. Sometimes the demands of caring, running a house and having some kind of life outside is challenging beyond my understanding. I really could relate to ‘deferred maintenance’ as I recently attended an appointment for myself with an eye specialist that I had been postponing. It felt almost like a treat to be there, I know that doesn’t sound well balanced. I have some work to do in that area. As I mentioned, I am moving us forward to sell the house and he agrees it needs to be done but its an argument every step of the way as far as decluttering and beginning to pack away. I believe that is what is vexing me at this time. Once again, showing me , my expectations need to be adjusted. My faith has grown, in that I continue to Let Go and Let God and I continue to let go of my vexing, knowing, at the end of the day, it will somehow work out. When he was first diagnosed with his relapse in 2014, I put all my energy into doing whatever it took to support him, the nurses and the doctors. Going to the hospital daily with homemade food, helping the over worked nurses, changing bedding , walking him, bathing him, helping him swallow a dozen pills without any salvia in his mouth due to the multitude of additional drugs going through multiple IV’s. Grabbing a wheel chair, when allowed, to take a joyous trip, outside into the healing fresh air. The joy of a simple ice cream. All those trips to emergency in the middle of the night with high fevers. They knew us well there. It had become our world. Following Directions and supporting and encouraging my husband to Follow Direction. Now, my energy levels are not what they use to be. The mental and physical fatigue is the hardest. I look for small joys, glimpses of moments of happiness. To relax and smile. Knowing that it is my energy , motivation and follow through thats going to get us through. Yet, I rely completely on my relationship of a loving God as I understand Him. Every day, I ask for help and direction. When he was diagnosed as terminal, I thought and believed God would give me all the strength and wisdom to walk this journey with him. Afterall, I thought, this is a sacred journey. Its official , according to the medical team, he’s close to passing over. And its a sacred privilege to walk closely with someone who is just about to go and meet His Loving Maker. I never thought it would last this long, I never realised the dark head spaces that my husband would be wrestling with and taking out on me. I didn’t think it would go on and on. Live each day gratefully, they say, try telling that to someone who’s identity and self worth was in his job and the material possessions he owned and places he could travel. Try acceptance, living life on life’s terms, finding things to be grateful for, that is what I have been taught. Although I tried to teach and encourage that with my husband, as the saying goes, you can lead a horse to water but you can’t make him drink. So I let go again. Every day, I let go in some way. and focus on what I can do. I am currently thinking of taking a little extra money and driving to the city for some ‘me time’. Its a thought, now with the preparation of selling the house, I wonder just hoe I will do that. Asking God for direction, not giving up and finding a way, somehow. Some say, put the thought out into the universe, have faith and watch what happens. No one really understands what its like to be a long time career but another carer. I hope the doctors read our feedback and the nurses. Integrated medicine can help with stress relief, meditation (prayer), massage, filing personal joy, somehow in this unpredictable roller coaster.
Thank you, Mnina

Jump to this post

Good morning @mnina You speak much truth in your post. Most of all, yes, caregiving is certainly a roller coaster! I often would go to sleep thinking one thing only to wake the next day and due to some change in my wife see the whole day unravel from what I expected into the totally unexpected!

Caregiving is truly an exercise in letting go. I was never one to let something go, but whoa, did that ever have to change as you pointed out! I began to follow a little internal routine with my wife. I would wake up and say to myself “here we go — I don’t know where, how, or what it will be, but I will attack the day as her disease demands. I realized there was no way I was in control of the day. My wife’s disease was the thing directing the day, weeks, months, and years of my life. I was just along for the ride to help her manage it the best she could.

I wish you well with selling the house. Change is always a challenge and bigger changes are simply bigger challenges in my book! I literally had to get a dumpster for our driveway when I finally could de-junk our home, I filled that whole dumpster, made several trips to a local women’s shelter to make donations, etc. The funniest thing is that I have not missed a single thing I got threw out or donated.

I, too, defined myself as what I did and it was tough to become unemployed and realize I was then defined as a ‘caregiver’. Over time I adjusted, but many of our friends couldn’t accept that in me, just as many of our old friends could not accept the changes the brain cancer caused in my wife. When someone becomes a caregiver I agree with you — few other than fellow caregivers understand how your entire life is turned upside down, inside out, and twisted until you could (and I often did) cry.

I have taken it upon myself to try and educate any decision makers of the realities of the impact of caregiving on long term, family, unpaid, caregivers. Not many want to listen, but I give them an earful anyway! 🙂

I wish you and your husband strength, courage, and peace along this unknown journey.

Please login or register to post a reply.