Meet fellow Caregivers - Introduce yourself

Hello @linda49 Nice to e-meet you here. I am sorry to hear of your mother's and father's health problems. I am Scott and I was the primary caregiver for my wife for 14+ years as she fought brain cancer and the last 14 months she was in home hospice. Almost all of this time she exhibited several mental and emotional distress.

Caregiving is an extraordinarily demanding role, but even more so when your patient is emotionally unstable as well as having the physical demands normal to failing and/or chronic health issues. Often times I found it was a lose-lose proposition. Demands of caregiving being the primary focus and demand, yet other parts of life also 'requesting' time and attention, both of which in high demand, primary caregiving situations are rare or often nonexistent! As I would say "if I had a dime for every time a person said to me 'take care of yourself' and did nothing to help with that I'd be a very rich man today!

While I am only speaking from my 14 years of experience and not as a medical professional I can say one thing, which helped me immensely, was to pick my battles with my wife. 99.9% of the things she said, did, etc. as long as they were not dangerous to herself I just let go. I did a lot of head nodding, agreeing with things I didn't agree with, repeating myself and chores she asked me to redo (pillow fluffing, sheet tightening, were some of her favorites), and saying to myself "it is what it is". Otherwise I could have spent every minute of every day fighting and I treasured what time I had with her too much to do that. I knew in my heart it was the disease lashing out, not her so it made it easier to take. Plus I knew she was terminal so she was fighting the hardest fight and I wasn't.

My wife's neurologist said to me the reason she lashed out at me was I was the one she felt the safest with, so she could vent, etc. and know I would still be there taking care of her. I was her only pressure valve as he said. I took that to heart and it helped me often.

He also said for me to remember "Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying 'I will try again tomorrow'",

Peace, courage, and strength!

Thank you. I have seen a therapist in the past who helped me tremendously with my depression. I fear the depression and I think you are right. I need to give her a call. Again, thank you for your excellent suggestion.

Thank you Nancy, for sharing your story. My father was only expected to live a couple months when he was diagnosed. He has exceeded that and although he has weakened, he is still able to bathe himself, go to the table to eat, etc. I was staying with him but left at his request. I check on him daily and I expect to walk in and find him gone every time. He is determined to die on his terms, which means trying to do something he isn't physically able to do. I have to live with myself after he is gone so I just try to make sure he doesn't cause injury to someone else.

Your message was beautiful and strengthening. You made me feel better and I cannot thank you enough for that. You truly understand and you must be one the kindest people on earth! I am so sorry for your loss and I know how much you must have loved your wife by your remarks. She was lucky to be loved by you.

shortshot80 ) Nancy...Hello everyone. This last weekend has been a crazy weekend. Last Friday June 16 I had my last radiation. So my appt was at 10 am, finished this a had to wait for the Doctor. He wanted to see me.He checked me over, Gave me a "Diploma" for finishing all my sessions. Told me he would call my cancer doctor and then after discussions will call me and tell me what will happen now. So we drove home 65 miles. Arrived home fixed a quick lunch. I was really tired. My husband (89) wanted to take a shower. He went into the bathroom, cut his depend off and caught his catheter with the sissors, and the catheter fell out. Well we called his nurse who drove about 45 miles to get here. She tried four times and could not get it in. So told us that she called the emergency room at the hospital and for us to go there now. away we go. Arrived in the emergency room and three nurses tried to put the catheter in ans failed. So now the doctor comes in and tries to get it in and he can't do it ether. So tells us he will try to get the urologist for us on Monday. Now Bob has a new depend on with a pad to catch the blood that was happening while everyone was trying to put the catheter in. So Bob jr, oldest son who lives with us to do the driving and what ever else. Anyway calls # 2 son Randy who lives close to the hospital to come and get me and take me home, after five hours at the hospital. I was really tired after everything that happened. Well # 3 son Richard was here at the house with his two friends Jerry & Dave. Dinner time.....So I had hamburger in the refrigerator. So Richard got busy and started cooking spaghetti for dinner. Now dinner is over, time is about seven. Dinner over, get the dogs outside,
I want to bed. Went into the bathroom, Wow! another job to do is to mop up all the urine. Finished that job, bucket of hot purex water.
Now it is Monday morning, have called the doctor at 8am. 10:30 now and still have' not heard anything. If I thought a beer or drink would help my attitude at this point I would take the whole bottle, but that won't help, Prayers at this point is better. Just got hold of the doctor,, Bob jr us taking Bob sr in to the doctor. Not only the catheter he is having a problem with his oxygen this morning. So driving 25 miles to the doctor and back. I will guard the phone the rest of the day. Note: we live in not quite the boondocks, but 25 miles either direction from a hospital. But we are happy and that is all that counts.

Good morning, Nancy. What an incredible weekend and beginning of the week you've had. I simply can't imagine it. It is Tuesday morning now and I hope that you were able to sleep solidly and uninterrupted last night. Did Bob Sr's catheter issue get resolved yesterday? Was he agitated throughout all of this? How are YOU doing?

Nancy, what a crazy time you have had! Praying and hoping you got some good rest overnight.

@shortshot80 Hi Nancy, I'm so sorry to hear of your difficult weekend - I can only imagine how tired you must feel. I'm always pleased to hear how your children are involved in your life - it really does take the edge-off a very difficult event. I'm praying for you and your entire family. How is your husband doing now? Teresa

Hope you have resolved all the issues by now. Congratulations on you last radiation and I wish you good health. I have said a prayer for you and your family (I hope that is ok) and I hope you have an uneventful rest of the week.

shortshot80 ) Nancy. Thanks for all the caring and prayers. I really needed them. He was at the hospital for over five hours yesterday,
Urologist could not get the catheter in yesterday. So today this afternoon they are going to take him to surgery and look with a camera to see what is the problem. Yesterday they put a "baby" catheter in. Guess they tried just about everything. Today will be different. He isn't looking forward to all the attention, But it is necessary. Today they are going to sedate him, So will see what happens. Nancy