Hello fellow caregivers. In case you’re not familiar with me, my name is Derek, one of the occasional family bloggers here on Caregiving.com. I work full time and take care of both of my parents: mom lives with me and dad is on hospice in a nursing home.
I’ve not participated for several months because of an always challenging and often overwhelming set of circumstances; not unique to this group I’m sure. I think I might have short-changed myself and deprived you of some good dialogue by not sharing my trials and tribulations over the past few months. So, with that in mind, I’ll try and get into the habit of spending a few minutes every day or so updating the blog, changing the way I do business, which has typically been to post some type of ‘article’.
Although varying day-to-day, those items requiring my attention remain consistent in their demand on my time, my energy and my emotional health.
The Rundown
Work
Not 9-5, greater than 40 hours a week, critical for me to maintain now and once my parents are gone. Just found out my project has ended 28 months early so now while I don’t think it will happen, unemployment is a possibility. I have faith that I’ll be taken care of.
Mom
Care for my mom is difficult most of the time because of her condition and a personality I didn’t know she had until recently. They have been playing with her anti-depressant meds so that contributes to her agitation and aggravation. She’s gone through a period of ingratitude with biting critical comments of my care for her. These were hurtful, but I know it is the disease talking and not my Mom. Nonetheless, it was something to deal with emotionally. Her decline has been marked and rapid of late and probably 80% of the time she needs 100% assistance. The transplant doctors say to keep on course. Her primary doctor says he doesn’t believe a transplant will happen, we need to consider Hospice for her, and we can add nothing new to her treatment protocol that would help. (I added an antibiotic after the last hospitalization and she has improved dramatically over the last 3 days and is able to walk, talk, eat, drink and toilet herself; hmmm).
Obviously there is some possibility that I might just be in denial/having an acceptance problem. There is also the distinct possibility that I know my mom very well. The good news is, hospice can be stopped at anytime, and if we did opt to feel that out, I would at least have some additional assistance and access to a chaplain.
Dad
The Hospice nurse has advised me that my dad is now squarely in the pre-death phase as he has begun terminal restlessness; something I knew nothing about until now. Averages (from the internet) in the pre-death state are 2 weeks to a month and active dying averages about 3 days. Dad has been in pre-death for a couple of weeks.
Derek
I am a basket case a great deal of the time. Now, as things are leveling out with my mom, work demands have calmed down a little, and I am able to get more than 3-4 hours of sleep, I find that I am less susceptible to my own emotional volatility and better able to handle the stresses of both my normal life and my not-normal life. Again, my hopes for any hospice relationship for my mother would be to provide the both of us some chaplain support. I also have to do something that makes this all real…start calling people and telling them they need to visit – BOTH of my parents.
Going Forward
I’ll try and keep things posted here as my saga continues. It may only be few short lines on how it went today, but as opposed to these little ‘articles’ I’ve been submitting; I think I’ll try the true ‘blogger’ format. Perhaps it will help you and I’m hoping will help me work out some of the overflow of feelings coming my way.
For now I’m shooting myself in the foot by staying up until past 2am and having to get up and work. Gratefully I am providing less than 100% assistance for my mom, so once I get to bed I should be able to stay there except for 1 or 2 calls from her during the night.
Peace and blessings to everyone. Look for me to write more soon.
-Derek
Hi Derek–I’m so glad to see you! I hope it helped to write some. And, I think it’s a great idea to write quick updates.
I’m so sorry about your mom and dad. I think you are wise to make phone calls. I worry about you being alone in this–we are here for you. And, I know other family members would want to be with you and your parents now, too.
Thank you for making us part of your day.
You are such a blessing to all.
It was so good to hear from you again in spite of the circumstances. I have thought about you from time to time and was wondering how you were doing.
I am so sorry about the continued decline in your parent’s health. Your long work hours and heavy caregiving responsibilities must leave you drained and fatigued. Recent changes in my husband’s condition have left me fatigued, and I am not also working a full-time outside job in addition.
I can understand the hurt feelings when your Mom made her comments. It is hard not feeling appreciated when you give your all. You are wise to remember it is the disease talking, but it still hurts, doesn’t it?
I hope at the very least you will be able to get proper sleep in the days ahead. You need to protect your own health. You will be in my prayers. Keep us updated.
Hi Derek..I also share the sentiments above. I am very glad to see that you wrote. It is hard to take the time, especially from your hectic schedule to roll up your sleeves and begin typing the story but once you do it helps and I for one am glad you burned the midnight oil to update. Im so appreciative of reading everything you always post …
I can understand once you start dialing those telephone numbers and request people begin to stop by things become real. When doing it for my Aunt I almost felt like I was speaking about someone else. The words were coming out fine however the reality was difficult. Once done however I was comforted by those visits and the friends and family that came were happy they had the chance to visit one more time. I hope in small ways those you will be calling with bring you much deserved comfort as well. Please know Im so blessed for caregiving.com as we all rely on each other to ease our sorrows and share our tears. Im thinking of you. Look forward to the updates whenever your able to write…
Hi Derek,
I am so sorry for all that is going on – all at once – right now. Your parents are so fortunate to have you and I hope visits from family members / friends will be a help to you!
My mother had similar personality struggles as you talked about. I stumbled upon a pharmacologist who was able to help us regulate many of her medicines.
Take Care Derek and I hope that all remains stable with your job as well.