I could say that I have not typed a new blog post the past few months because of time constraints, sleep deprivation and/or unexpected emergencies. Even though all are true I have carved out the time. Leaning into adversity is my next blog and this all comes from personal experience as opposed to people I have worked with. My father’s health has not been going well as of late and as his primary caregiver and the only person he lives with, this is where my time has gone.
Since March of this past year my dad has switched from hemodialysis that is done in a clinic three times a week to peritoneal dialysis which is dialysis that is done every day at home. The hope had been that he would pick up the process and do everything for himself, but that has not been the case and a source of much tension.
Also going on with my father is the process of dialysis. He has been on dialysis for over five years where the side effects are insomnia, appetite changes, muscle atrophy and neuropathy where his fingertips and toes go numb… just to name a few. The biggest effect on my dad has been his loss of mobility where he has had to use a cane or a walker, now a wheelchair.
The biggest issue with the peritoneal dialysis has been the machine being very temperamental where it will beep loudly. Typically, this process is done at night so the person using PD will have time back in their day. Every time the machine beeped at night my dad would yell my name at the top of his lungs therefore interrupting my sleep.
This came to a head last week when the machine would beep an error multiple times a night because of something my dad was unintentionally doing. So, tempers became heated very fast. My argument was “I am burned out; this is not a good solution.” Where my dad would respond, “you can’t send me to a nursing home, I have been in this house for over 50 years.” Also, this argument happened at 3:30a in the morning. Where does a person go from here?
The biggest issue for me was that I was not getting sleep. The biggest issue for my dad is that his mobility was so limited that he was dependent on me just to hit the button on the machine for the beeping to stop. The solution that we came up with is… do the dialysis during the daytime. This way, if there are any errors, I would be awake to fix them, and he would learn from that. Plus, we are both going to the clinic where he gets his supplies to go through a class on the errors and alarms of the PD machine.
The overarching issue has been the state of my dad’s health. For now, he can be at home. My dad is fortunate enough to receive money from the Veteran’s Association and Medicare that we can hire in home care. The question that always seems looming is… how much longer?
There are several sets of eyes and opinions regarding my dad. One set is his doctor and nurse. Another is his secondary caregivers, my aunt and uncle and the third is me. A few weeks ago my dad fell four times in one week where paramedics had to be called to pick him up. With that I was advised to investigate rest homes and assisted living. This week he has been doing much better as running dialysis in the daytime has been positive as I am getting my sleep, he is getting the care he needs, and his caregivers are not exhausted. For me, living with him, the day to day can get the best of me thinking, “what is going to happen today?”
As of now, there are no plans to send my dad to assisted living. As my aunt would say, “how am I going to muscle through the day to day demands for me dad?” The first and most important is to lean into friends and supports. Even lean into people, such as doctors who will tell the truth, no matter how ugly it is.
Three weeks ago, now I took a “vacation” of sorts which consisted of driving to Ohio and West Virginia to see two good friends of mine I had not seen in a long time. I cannot tell you how refreshing and rejuvenating this was. This was possible because my aunt and uncle cooked dinner for my dad four nights in a row and I had him set up to have dialysis in a clinic. It took a lot of preplanning, but it was worth it.
All of this is to say adversity cannot be faced alone. When going through adversity, every day is going to bring a new set of worst-case scenarios where those feelings and thoughts need to be processed. Sometimes those worst-case scenarios, like outing my dad into assisted living, may come to pass where relief comes from doing some research and calling some places to investigate what the process would look like.
Secondly, make sure you are taking care of yourself. This may sound like a no-brainer, but it is easy to give more than you have. The week I mentioned where the dialysis machine beeped incessantly for three nights in a row… I had to take an afternoon off from work just to take a nap. Make sure you are getting in exercise, even if it is in bursts and proper nutrition.
Lastly, pay attention to how you are feeling. Being a caregiver is very taxing. I have had to learn to keep short accounts with my dad or I will resent him. The solution for this is to talk through it and empathize with him where I can.
This is where the idea of running the dialysis during the day came from. When I do not get my sleep, I am not good for anyone. I am not able to fully be present and listen to a client is I am sleep depraved. My dad knew how frustrating it was for me to come downstairs to shut of the alarm, so this decision was made.
As of now, I do not know what is going to happen with my dad, and that is scary. We have the means to get him care but what about six months from now? If my dad did go into assisted living, that would be the absolute worst and absolute best at the same time. For now, he is staying home.
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