I spent some time with both of my parents today – it was ‘family day’ at the memory care home where my dad lives. It was interesting to see probably five times the number of people there as usual (there was free food). Actually, all of the commotion got on my nerves – I guided us back to the sanctity of dad’s room, counter to the activity at hand!
Mom has had some challenges this weekend. I was going to put her in the hospital on Friday, but she and I decided that we would try and get rid of the ammonia build up at home and stay out of the hospital. I purchased a bedside commode – basically a bucket on a chair, because with her Lactulose treatment she doesn’t know it’s time until it’s time and because of the encephalopathy, her physical coordination and mental alertness are at around 30%. So, ‘to go’ two feet from the bed has proven very helpful in reducing accidents and anxiety.
Dad hasn’t uttered a word in well over two months now. He still seems genuinely happy to see us, so I think he at least knows we are somebody, even if he doesn’t know who we are to him. I don’t know how he’s going to do when I put him in a regular nursing home at the first of the year, as he converts to Medicaid. The facility where he’s spent the last 1.5-2 years only does memory care, so they are intimately familiar with his condition and how to handle him. Of course, there is a handy premium for this service; one, sadly, that is not negotiable once the funds are depleting. But, we must be grateful that it was there for him as long as it was. We must refrain from allowing the bitterness bubbling up in to the back of our throat to flavor our day when we think about it. As with all things, we will press forward and deal with it, unless God mercifully takes him beforehand. It really isn’t in my hands anyway – I’m just a worker bee.
I cannot believe I am saying things like ‘unless God mercifully takes him’. I always thought saying things like that was so unloving, but I now know it is just the opposite. That just goes to show, you can’t judge something until you’ve lived it – although we do it ALL of the time, don’t we?
Mom and I talked about death tonight, briefly; something we rarely talk about. She expressed to me that she wasn’t ready to die and I responded that I wasn’t ready for her to die. Capitalizing on the moment, I asked what she wanted to get done before she died – and she didn’t know, but perhaps it opened a door for further discussion, or at least stimulated her thoughts. While I still hold out hope that she’ll get the kidney-liver transplant and live happily ever after, I’d like her to start working on closing any loops she still has open before her transition.
I am amazed at the range of emotions I can experience in a five-minute time span. I was certainly visibly sad after spending time with both of my parents this afternoon. I was sad because people were talking with their loved ones, experiencing meaningful exchanges. This, of course, is something that for the most part now eludes us with my dad. These struggles to communicate are seen with my mom as well when she is really bad off – which is becoming more frequent now. I know intellectually that without the transplant, the lapse between bouts will eventually close, until she will remain in the encephalopathic state.
When talking with her about her death tonight, I could barely control my emotions. I know I’m doing what I’m supposed to be doing – but it is so emotionally challenging sometimes – I just get so overwhelmed and sad. I really do have to hold it together for them. After all, I’m just borrowing sorrow from the future, which is pointless. I mean, what I am I doing, rehearsing the grief!? How absurd is that? No, I know that it is anticipatory grief. Sometimes I can shut it off, sometimes I just can’t. Today, I could distract my mind.
Tomorrow my mom has a very important doctor appointment and I have a very critical deadline that just popped up at work in my new job that I just started 2 weeks ago. I find myself leaning toward moving her appointment because of my deadline…I’m not sure how I feel about that. Am I delaying her medical care because of a job? I think that would make me feel rotten, if that were the case.
In all of this extracurricular mental activity that, frankly, zaps more energy that one would dare admit, I arrive at the self-gratifying solution that I am doing the best I can do, even if it isn’t where I’d like it to be. Sometimes I don’t know why it is so difficult for me to accept that I am human, after all, isn’t that how I was created? Am I not honoring my parents and my God by taking care of them?
God, please help me be the best caregiver I can be, and may I reach even higher then.
Blessings all,
-Derek
Hi Derek–I’m sending positive thoughts your way that all works out today for you and your mom. You make good decisions and the decision you make today will be a good one, too.
I loved reading your post. I loved being invited to be involved in all that happened with you and your folks. You are very special–when you invite us in, we all feel special.
Wishing you peace…
Very moving and TRUE post, Derek. Thank you for being so vulnerable.
You are struggling with the conflicting demands of a new job and your mom’s appointment. As an outsider, I’m wondering if there’s any one at all who could go to that appointment for you. Believe me, I know how hard it is to ask … and I know they won’t know (or hear) as much as you would do. But it could be an option. An imperfect one, yes, but life is like that.
You know, I heard Bernie Siegel on a teleclass a few days ago — yes, THAT Bernie Siegel — talking about how at one time he was completely overwhelmed by his life. His wife had just been diagnosed with MS and they were caregivers for his father-in-law.
Dr. Elizabeth Kubler Ross said to him: “Bernie, you have needs too.”
Very best wishes,
Sheila
Hi Derek
Thank you for writing your heartfelt story. I can feel your pain. You are being the best caregiver you can be – I can feel that also. Your sensitivity is way too deep for you to do anything else.
Not being able to communicate with your father must be very painful. I’d like to suggest something if I may. When you visit him, if he’s in a peaceful state, preferably even resting or sleeping, sit next to his bed and start breathing in sync with him for a few minutes – at least 5. Then close your eyes and envision a pleasant memory you’ve shared. Continue breathing for as long as you’re comfortable – at least 5 minutes. When you open them you may find his facial expression has changed. Whatever the case, rest assured, you’ve connected. You can send him messages this way. He will hear you and know exactly who you are.
He may communicate with you this way also – especially through dreams. I’ve seen this happen so often. Last night my mother and I shared a dream. She is nearly 90 and I’ve recently become her full-time live-in caretaker. My situation is different from yours but that’s neither here nor there. Suffice it to say that it’s possible to communicate this way even without the shared DNA – having it makes it pretty much fail-proof. Know that it’s happening, even if the outward signs are not there at first.
With everything I’ve gone through in the past 2 years with my mom, Bach’s Rescue Remedy is always within reach. If you’re unfamiliar, it’s a purely vibrational remedy – a lot of info on Google. It’s invaluable when going through any kind of emotional upheaval, allowing us to process in real time so emotions pass through us rather than lodge there. It’s also non-toxic, with no contra-indications. (I have no interest in the company.)
You may already be aware of these things, I have no way of knowing. In any event I hope you don’t mind my suggestions.
Wishing you all the best, and sending Chi your way
**PJ
Hi, Derek,
You sound like a very caring caregiver to your parents. There are a lot of emotions involved in caregiving,and it is exhausting. You ARE honoring your God by caring for your parents. You are a human being with imperfections and limitations, but you are doing the best you can with the circumstances you have been given. Trust that God will lead you to make the right decisions.