Dealing with anxiety and anticipated grief

[MyDad76]

I'm a sole caregiver of my dad, who has metastatic castrate resistant prostate cancer. It is just the two of us, my mom died years ago from cancer, I do not have siblings nor partner or a child.

Most of the time since diagnosis i lived on auto-pilot. By convincing myself that he has many time ahead, I somehow managed to get by. I did get bouts of anxiety, I went down the guilt trip several times (thinking I should have done more for him), but I managed to convince myself it is not the end of the road and pulled myself up.

However I fear this time around it is different. As summer is approaching and he took of long sleeves, I was shocked to see how thin his arms are. He is also turning yellow and I see in him signs of widespread cancer that i saw in my mom years ago.

In our country he basically has one treatment option left: chemo, which he will almost certainly refuse. While I was investigating about LU-177 I doubt he will event want to travel abroad and i fear we are too far for it to make significant change. He would just like to live whatever time he has left in peace and than go down as quickly as possible.

My poor dad never complains, but is fading in front of my eyes. He does not speak about this feelings, but in the last month or so it is like he is preparing me to go on without him. He is telling me where stuff is etc. Something he never did in the 7 years since fighting the disease. With last drop of strength he has left, he is building a fence to protect garden against deer. I told him i can pay someone to get it up, but he wants to do it. Like last gift for me.

And i got these immense sense of loneliness realizing, that it will probably not be long, before his situation will deteriorate to the point of no return and only suffering left.

For the past 2 days I can hardly pull myself together and all I can think is what will I do without him. I'm telling myself to live in the moment, but so far to no avail.

How do you deal when such days come? How do you pull yourself together to be there for you father / husband / brother? I go out in the garden to distract myself, but I must put my head in order to be strong for him.

[Yadifan]

Oh my...I'd hug you if I could. I'm not sure where you live but I do feel a few things here. It will always be your dad's decision regarding treatment options. Chemo can be tough, but I know that many have tolerated it well. My husband did - and he went through a lot of it. I'm not sure if you can accompany him to doctor appointments. If so, you may want to call ahead of time and talk to his doctor about your concerns. It may open discussion with you both that could be helpful at his next appointment regarding side effects and quality of life. We caregivers all go through those dark periods. Someone telling you to not do that is not helpful. I'm sure you're stronger than you think and are doing a wonderful job of taking care of your dad. I'm glad to hear you have a garden. Find joy in every little thing. Find a show that you and dad can enjoy together with a favorite dessert. Be kind to yourself. You sound like an amazing young lady.

[MyDad76 in reply to Yadifan]

Thank you for your kind words! We live in Slovenia (small country in Europe, borders Italy, Austria etc). I would never impose my decision upon my father - I would say how I feel, but ultimately decision is his and I support him. I go to every doctors appointment with him and next one should be in approx 2 weeks. I'm sure discussion "cost-benefit" will be on the table and knowing my father and the doctor mentioning adding months, I'm rather sure his response will be let me live whatever is left without going to doctors.

I guess for me the major part of stress comes from the fact, that my dad was severely under-treated. When he was diagnosed (after TURP; Gleason 4+3 = 7) he did not mention it at home, as mom was recently diagnosed with pancreatic cancer. His doctor just put him on old fashioned hormone treatment (bicalutamide). Never mentioning the need to operate or radiate. When I found out I did get second, third and forth opinion, but as it turns out, ageism is very present in or national (state) health system. Meaning that if you are 74 years old or older, they treat you as "this is old men disease, you will die with it not because of it". I think they do not even look at your numbers, just look at your age and say, average life expectancy for men is 80 years, he will be fine. They do not even bother to ask if one has any comorbidities (my dad has none). Just one doctor propose to radiate or operate, all the rest, so 3 doctors claimed treatment with bicalutamide is sufficient. I was not at peace, but obviously my dad listed to the doctors. They even made me believe I was over-reacting and I kept hearing he will live with the disease normally. On top of that we have state health system and only some out-patient daily clinics. For everything outside this daily clinics you need a referral. By the time I finally pushed for referral for radiation, it was too late. So I deal with great deal of regret, anger, feelings of guilt and remorse as proper treatment would have most likely resulted if not in cure at least in much better survival.

I will pull myself together, I have no doubt here as I have no option and I will never let my dad down. But I do not even want to think what I will do when he is gone. I will try not to go down that path, but sometimes my mind gets the bets of me.

Thank you again for your kind words. I hope you and your husband are doing well.

[Loudlibrarian]

What a wonderful daughter you are. Your father must be very special to be loved the way you love him. It’s heartbreaking to see the people we love suffer and while we can be strong for them, we’re human. Speaking about how you feel and sharing that there are days you feel like you’re floundering is the best thing you can do. I hear you loud and clear! Strong women don’t always have to be strong you know. I too alleviate my anger, sadness, hopelessness in the garden. Do that more often. Cherish the fence building project and keep on looking forward. Life is so very sad sometimes, but loving and having been loved is a gift no one will ever take from you. Wishing you and your dad many good and happy days ahead. ❤️

[MyDad76 in reply to Loudlibrarian]

I always say, that I won the jackpot by being born to my parents. Both absolutely terrific, I could not ask for anything more! Our house was full of love, always secure place to come home even as an adult. I love gardening, it is something I grew up with and when in the garden I feel strong connection to my roots. Thank you for best wishes!

[Zengal79]

My heart goes out to you. I’m sorry about your mother, and here you are in this situation. I too was an only child when I dealt with my fathers terminal illness taking care of him at home on hospice. Being an only child is special but often a lonely journey.

Your dad is dealing the best way he knows how. My partner passed in December from this disease after failing Lu177. I was his caregiver. He was in therapy which I think helped him to be able to deal with his illness. He encouraged me to get into therapy as well. If you have that option, it certainly can’t hurt.

Try to take it one day at a time. Better weather this time of year will provide opportunities to enjoy simple things outside. Find joy in as much as you can with this time. The fence building is probably a memory you will one day cherish. Encourage staying active as much as he can. Staying active helped my guy very much.

I also joined a local caregiver support group where I felt less alone. I’m unfamiliar with what end of life care options are there, but Hospice was also very helpful for me to keep my guy at home.

We had a philosophy to enjoy each moment, each meal, each experience together mindfully. We have cancer the time it required and only the time it required. We did not let it rob of of joy ans gratitude. Some days we were better than others at this. Sometimes you just have to let the sadness flow. That’s okay too.

Best wishes on this journey. He’s still here right now. Enjoy what you can. You will figure out how to go on without him when it is time. One step at a time. Try not to get too far ahead of yourself.

[MyDad76 in reply to Zengal79]

When covid started, the company I work for asked us to work from home. After Covid pandemic ended, they gave us free choice - return to the office or work from home. I can not say how grateful I am for this opportunity. Due to work I lived in a different city and was coming home every week-end to take care of household errands since my mom died (in 2016). So I moved back to my home town and childhood house to live with my father when Covid started. I'm with him all the time, he is not lonely. I cook all the meals, take care of all the household errands, manage all doctors appointments etc. So at least he is not burden with this.

I'm very sorry to hear about your partner's passing. Please accept my sincere condolences.

My dad is actually completely at peace with regards to the disease. I'm trying to ensure him that I will be ok. I know that is what worries him the most - not his passing, but how I will go on. I was already contemplating to go into therapy, as I don't know if i will be able to deal with feeling of anger, guilt and remorse in a healthy and timely manager. My dad was not given proper treatment when he should be and that is killing me inside. I'm very emotional person and it always takes ages for me to move on. So I would like to spare myself from spending several years after his passing completely overwhelemd by this feelings. I know he would not like that and would like that I would live my life to the fullest.

I really like when you are saying that you gave cancer the time it required and only the time it required. I will try to be more mindful with regards to it.

We do go for long walks. And we sing - my dad has angelic voice (I did not inherit that trace though 😆)

Thank you again for your kind and wise words. I too wish you all the best!

[Zengal79 in reply to MyDad76]

What a gift that you get to spend this time. Therapy has helped me immensely, and helped my Brian as well. You’re a wonderful daughter. Life is hard. It is also very beautiful. Keep trying to find the good.

[Lrv44221]

You are an amazing person and caring daughter. 😊 What you are going through must be very difficult and somewhat overwhelming. How do you pull yourself together and get past the loneliness? So many of us caregivers ask that same question, so you are not alone.

As a nutritional practitioner, I counsel women and see that emotion often. I don't have a "one size fits all" answer. As the wife of a PCa man, I see things differently.

For me, it is helpful to keep a journal, meditate, draw (I am a freelance artist) play music, and help clients.

For you, I feel that there might be something only you know, that might help you realize just how wonderful you are. Please know that Many of us, think you are wonderful. Since we live in a conditional and ever-changing world, we need to find something that can help with our issues. I hope you will find what you need to help.💜💜💜

[MyDad76 in reply to Lrv44221]

Thank your very much for your kind words. Your husband is very lucky to have you!

I think gardening is my thing. It is something I grew up with and when in the garden I feel strong connection to my roots. But I will also consider therapy to help me deal with emotions.

[Lrv44221 in reply to MyDad76]

You are so very welcome. I'm glad I could help a little. Yes, I agree, try the gardening. as you said it is in your roots. For me, I am not a fan of therapy. I also am a trained psychologist (as well as nutritionist), , but did not get my license for many reasons. for you, I think it is important to do what you think might help. :)💜💜💜

[Sam2346]

I guess we try to learn to block the what ifs, but also know what we will face eventually and prepare ourselves the best we can for it, not easy