Hello? Is anybody out there?

Candlelit dinner on a stormy night

If is now late October 2018, this blog has been running for about 8 and a half years now and has morphed from our journey from British Columbia to New Brunswick, from working mom to stay at home mom to homesteading and now to caregiving for my husband. What a trip it's been! Who knew when I started writing this that we would be here today and that all the miles between would feel like a lifetime ago! 

Tree damage,
not too bad overall!

I guess life is like that though. I find I am a bit like my dad that way, we get excited about new projects and ventures and about every 5 years or so need a new adventure. My dad left his "safe" job in his early 40's to become an entrepreneur and I left my "safe" life in my mid '40's to start over as well. We both left our comfort zones and we both left our families and friends to begin again. Now I am in the next stage of life, caregiver to my spouse.

As my life changes so does this blog. The purpose of my blog now is to reach out to other caregivers and identify challenges and stresses that we may come up against as we provide daily care to people we love; as we offer them a quality of life that we would want and as we maneuver through the healthcare system. Secondary to this writing is to update you on how my Trip is making out and doing as he fights daily to heal and recover from his cancer battle. Mostly, it is to know that whether you are the caregiver or the "patient", we are not alone, we need help and support but we just keep getting up each day and doing it again because we want to, we need to and it is what we know our loved one would do for us. 

Cooking dinner while he sleeps
Power out for about 12 hours

The past few weeks have been long, they have been healing and they have been frustrating. We have had trips to the emergency room, he has had CT scans and is scheduled for an MRI. We have gone through power outages - at the hospital as he was about to have his CT and longer ones at home 12+ hours during our first winter storm. We have had to rebook appointments and thus wait longer for information. No problem, just take it in stride and be prepared.

It has been hard to watch him in pain and struggle with the frustration that no one can seem to isolate the problem or offer a solution. Living on morphine is NOT a solution! Pain causes weakness, and makes it hard to eat or drink and get strong. Pain and drugs make for lots of sleeping at which times I wonder, do I wake him or let him sleep? I have to wake him, to eat and drink and eliminate waste from his ileostomy bag. I make calls and ask for help, just to wait... I feel as though I can't do anything because what if  a doctor calls? What if an agency calls? What if I need to take him to the hospital? So, the phone is attached to my side. I stay in the house so that I don't lose the signal and I am quiet... I don't play music or watch shows because I need to hear if he is ok, how is his breathing? Is he moaning in  pain? This is our life. 

Let's clarify, these are NOT complaints, I am not asking for or expecting any consolation, I am just voicing how it is, the day to day, the emotions, the exhaustion, the reality. Part of my coping is to share and write it down. Some of the hard things to cope with are, I don't want to leave him alone, but I can't get any help, we are too far away from town. Some days it feels unnecessary to think home care would be required because he is up, feeling good, able to stay awake for long periods of time and even do "walking laps" around the house. Other days it is all he can do to make it from the bed to the bathroom and how can I possibly leave him alone? Last Monday a good friend spent the afternoon with him, which reduced my anxiety greatly as I hurried to town and back.

Doing some dryer repairs

Not bad but still not working
On to step two today

I can get support for home care, but I can't get any service. Living in our rural area is beautiful and amazing but not when you need help. No home care will come, no plumbers show up, no one wants to drive out here to do work. The last month I have spent hours calling, asking, needing, but nothing. So, I do it alone. Again, this is just life. I figure it out.  I will winterize the trailer myself. I will pull down the damaged trees from the storm. I have learned how to clean out and repair my dryer (I hope!) and I make accommodations and try to meet challenges head on, maybe not always with a smile but I am grateful for my friends at YouTube and Google who are assisting me as I go forward. As well as the Facebook world who answer my call when I ask for advice.

What to do without power?
Rug making by the fire!

I am sure we will get through it all but if already feels like it will be a long winter. I am not complaining, I am sharing. What do I need? What do caregivers need? A hello, a how are you, a chat. I find it hard to do that because I have nothing else to talk about. The days run into each other and I often have no idea what day it is. How do I determine the calendar of events? Simply that - Monday is extramural nurse day and me to the hospital with his bloodwork; the other days are determined by medical appointments and phone calls and the search for help as needed. Minutes, hours, days, all blend into each other so I keep my journal close to ensure I don't forget anything.

Before the major snow hit

So, if you speak with a caregiver, just say hi, ask them how they are and listen - if they say fine - they probably are that day or they don't want to get emotional - if they say not much is up, they might mean - tell me about you and your life because I really do want to hear about something else. Many people say "I didn't think I should call or stop in." Why not? At the most I will say "Thank you or it's not a good time." Or maybe we can have a cup of tea, even if he is sleeping, or maybe he will be up and ready to talk for a few minutes. Don't ignore caregivers, they need you, talk to them. Tell them about you - What are your kids up to? What adventure are you on? What is next for you? It really is nice to think about something else for awhile and just live vicariously through you. Tell me something funny, make me laugh. Let me feel your joy for just a few minutes. 

Don't forget about me. I am still here. 

Peace and love, Daisy

A time to heal, A time to mourn, A time to love...

Celebrating the END of chemo!
8 pounds ago... 

Friday, October 5th, was the last day of chemo, the end of 8 cycles of treatment, the bottle was removed and my handsome gonged the cymbal and celebrated to the tune of "Gonna Fly Now"  - the theme from the Rocky movies. He woke up that morning, felt like a fighter and was ready for this part of his journey to end. It didn't end. The past week he has been at his lowest and sickest ever and I wondered if he would still be with me when I got up in the morning. His fight was gone, he was exhausted and slept, almost all day. Out of 24 hours, he was perhaps awake for 3 of them, long enough to void, eat and fall right back to sleep again. It was so scary and I thought this was it.

I know that finishing this long treatment was not an automatic "you are better now" resolution, however, I didn't expect it to be like this. My poor husband was weak, battered and had no fight left. He may have "danced" to the Rocky theme music a week ago but the after effects, physical, psychological and emotional wore him down. Now, if you know him, you know he can have a bit of a "fatalistic" or "pessimistic" attitude, but this was not that. This was worse, this wasn't a thinking man spouting off his beliefs, this was nothing... zero... zip... and scared the hell out of me. 

I couldn't leave him alone. I couldn't wake him up. I couldn't get him to speak to me. I couldn't get him to eat more than soup or oatmeal and very little of that. I read the books about "after chemo" and "what to expect" and that the fatigue was normal, but this did not feel like fatigue. This felt like nothing. That is such a poor description but he didn't care about anything. The little emotion he had was tears running down his cheeks; remembering his parents deaths and focusing on that; and apathy with the world around us, including me.

We are both looking tired and weathered,
 but still here!

It is now Saturday, a week later, he is still here. Last Wednesday I had my doubts. We had to go to the surgeon to meet and discuss the action plan and what is next, and that was demoralizing for him. We both walked away unsure about the future. We also discovered that between Friday and Wednesday he had lost another 8 pounds. That terrified me. I proceeded to spend several days crying, worrying and trying to figure out how to cope, how to help him and what to do next. I realize I can't leave him even for a few hours when he is in that state and have to put a plan in place for that. 

Thursday, he sat up for a bit longer and actually asked for food. I would have done anything he wanted at that moment. Friday, started strong and by mid day he was done again, worn out, in bed, pain starting and little appetite. I have been reading a lot about life after chemo. It is not an automatic improvement. Everyone is different. Doctors say that there will be a slight improvement and increased energy over about an 8 week period. From what I read, for some people this can take a year. I am here. Whatever he needs, I will do my best. Some days are harder than others. My energy is low for doing much except for him, I have endless energy for his care.

We often wonder how people who are single or alone cope. I can't even imagine how one would get by without someone to drive them, care for them, prepare their food, take care of all the day to day stresses, bills, laundry, cleaning, etc. We are both so grateful that I have been able to just be here for him. Listen for when he wakes. Assess his pain and discomfort and track his pills and medications. The journey is not over. The bell rang but the gong show is not over.

I keep the wood stove going, the house warm and I listen to the hum of the fridge, the freezer click on and off; I grab the phone so it doesn't ring more than once and disturb him; I intervene at the door if someone arrives; I attempt to predict his wants and needs and ensure that he is "watered and fed."  I shield him from financial, political, social and environmental issues that may over excite him or even more frightening, hold no interest to him. This is the life of a caregiver. Any of you reading this who have been caregivers, know what I mean. It is not special for me, but it is our experience at this time and for as long as I am required I will ensure that I am available - willing and able.

Signs of encouragement at URVH

Day by day, moment by moment. This is life. Would he have chosen chemo again? I doubt it. Does he think he did the right thing? Some days yes, some days no. However, we make the choices with the information we have. The research done, we look at the statistics and standard of care. We use pharmaceutical and holistic methods and we go forward. I see meme's and comments and judgements and I don't know what I would do if I was in his situation. I do know however, that we each do our best and what we feel is right and we need to respect those choices. Would we do it again? Maybe not. He has been a warrior and he has worked hard... 

One day, we'll ride again...

However, this is life now and I am so grateful that I still have my handsome, because he still is and always will be. I am so thankful for that foot rub 13 years ago that made me see my friend in a different light and opened my eyes so that I could see his love. I am here for the long haul and we may not travel; we may not get to fulfill some of our dreams, but my dream is to be with my love and that dream has been fulfilled. 

Peace and love,

Daisy