One of my favourite words in the English language is the word “discombobulate”. It has it’s origins as an early american slang word that means to confuse, disconcert or befuddle. It also means to cause to be unable to think clearly.
I think I first really came to appreciate this whimsical word when I was working with 2 little autistic girls in kindergarten. The one little girl would emphatically complain, ” I’m discombobulated!!” whenever she was overwhelmed or confused. It was the perfect word to describe how she was feeling and it has become my go to word when I also am confused or overwhelmed. The way it bounces around on your tongue is exactly how my brain feels as everything is bouncing around in my brain. Thoughts are pinging back and forth with no rhyme or reason.
I think this is a wonderful word for us on the autism spectrum. It so thoroughly describes how we feel when too much is coming at us, when we are totally bewildered with the world around us.
I have found myself saying this word a lot lately. It seems my world is ever changing and confusing and as a result I am totally discombobulated. Let me give you an example.
My elderly Mom fell last week and she is getting steadily weaker. She told me the other day while crying, that she didn’t think she could get to the bathroom by herself anymore. I went into hyper-alert mode where I felt something had to be done to address this new state of affairs. I asked for more PSW support, I asked for volunteers from my church to help stay with Mom while I did errands because I did not think I should leave her alone. With some people lined up I felt more secure in thinking I had tackled the problem and Mom would be safer. The next day Mom was in good spirits and told me she could get to the bathroom by herself – thank you very much!! So this is where I suddenly get very discombobulated. The whole scenario has changed. What happened to the way she was feeling the day before?? How do I plan for Mom’s care when things change so drastically from day to day??
I have learned that this is the new normal state of affairs – total discombobulation! I never know which Mom is going to wake up – the weak, struggling mom or the confident, cheery mom. And how do I look after her effectively when each day has the potential to be so different? I have had wise advice that I just go with the flow and do my own thing like I have always done. Continue to do errands when she is napping, get her to go to the bathroom before I go out, remind her she has a lifeline she can activate and that I always have my phone on me.
Even though I love the word “discombobulate” I detest how it makes me feel. It’s like living with pain in your brain. It’s like you are walking on jello. Everything is all wiggly and jiggly. Nothing is for certain or stable. Not a fun state to be in. Looking after Mom is often so discombobulating which just adds to the stress I am under but it’s all part of the journey I am on. Travelling along the road of Mom and me together and suddenly you hit a mess of potholes and you bounce around like those ping pong balls in a bingo machine. And let me tell you, our roads are full of potholes especially this time of year.
Well, so I am anticipating more discombobulation. Comes with the job description. It’s a small consolation to at least have fun saying the word when I am in that state. DIS-COM-BOB-U-LAT-ING!!!!!
On my Dad’s deathbed, I made a promise to him – I would look after Mom for him. True to my word, I have been doing that since he died. I looked after her while she was in the retirement home and then I have looked after her in my own home the last 4 years. ( our 4th anniversary of being together is Nov. 30)
I came to the realization the other day that I see this journey as a sort of race, perhaps more of a marathon! I am determined to look after Mom till the day of her death and hopefully not have to put her in a nursing home. I also realized that my determination to see this journey through to the end was not just for Mom’s sake but also to in a sense prove to myself I could do it. I could win the race set out before me. That would be my success. Anything less was unacceptable. In fact, if for some reason Mom went into a nursing home I would see it as a huge failure on my part. I would be a failure. Everything would be in vain. I would have broken the promise to my Dad. This would be almost unforgivable.
There are days when this journey is too much. I want to quit. I want out. But my stubborness pushes me on despite my protests. Thank goodness these days don’t last and for the most part I am in the race with every ounce of energy I have. On both the good days and the bad days I struggle with severe exhaustion and I turn to my faith – to Jesus Christ who said His grace is sufficient for me, His power is made perfect in weakness. (2 Cor 12:9). I struggle along even if I am on my knees crawling.
The other day my friend was over and I was talking about how this journey had to be a success. I could not fail. She very gently pointed out that this journey has had many many successes along the way and the end success was only one of many. This was a new concept for me. I had not thought of the success of this journey in this way. As I mulled over this for several days I have come up with some “other” successes that have happened over the last years especially since Mom has come to live with me. Here are a few of them:
- I think one of the most important successes that has happened has been the enormous amount of healing that has happened with my relationship with Mom. She is not even aware of these healings as they have just gently come about from me looking after her. We have not had deep discussions about our relationship and how it has changed. I just know without a doubt that the burning anger and hurt that was there for most of my life is now basically gone. Instead there is a new understanding of who she is and perhaps some of her shortfalls that were her problems not a reflection of who I was as a person. Knowing she is probably on the autism spectrum has greatly helped me to accept her jabs and comments knowing that she is probably unaware of how they may affect me. I also now understand some of her idiosyncrasies and don’t take them personally like I used to do. It is very freeing to be able to shed the hurt and anger and instead just love her for who she is. It is really a miracle that has happened not just a success.
- Those of us with autism can get very self- involved and it is hard to see beyond the end of our noses. It’s not that we are selfish or self-centred. We almost need to focus on ourselves to manage the difficulties of life with autism. One thing I have noticed through taking care of Mom these 4 years is that I am much more outward thinking. I am able to do better at that “Theory of Mind’ stuff that is so difficult. I take great pride in providing Mom with little treats that she might like such as her favourite cookie or a pot of flowers or a new outfit to wear. It brings me great joy to bring joy to mom. And this spills out into other areas of my life with my other friends and people in my life. My sensitivity to others and desire to help others has grown. I don’t think this would have happened if I had not had the job of taking care of Mom.
- A very practical success is that by living with me Mom’s financial resources have lasted much longer than they would have otherwise. Being with me has given Mom the financial freedom to do some things she has wanted to do that had she stayed in the retirement home she would probably have run out of money.
- Mom being with me these last 4 years has also given me a financial stability that I might not otherwise have had since I always had to rely on students or other roomates to make ends meet. It was always a worry if they decided to leave or left in May or June and I was left over the summer with no extra income. It was always hard not knowing if you would get along with the roomate or not but having Mom with me has given me an emotional stability in regards to who is living with me.
- A huge success is just having the company of my Mom with me every day. To just be able to talk with her and share our lives together is such a blessing. I’ve learned a lot about my childhood and other details of our family’s past that I might not otherwise have known. I have recorded some of our conversations so I will always have them.
- Being together has also brought us closer to some of our family members who were distant before. I think of my cousin Donna who I cherish and who has brought such joy to Mom through her daughters’ children, her grandchildren. Her one daughter had twins and we are enjoying seeing them grow and flourish and also enjoy little Drew, her other daughter’s son. I enjoy running off pictures from Facebook to show Mom of the wee ones.
- Another success of having my elderly Mom with me is that as she gets frailer and I try to deal with the anticipatory grief and other issues around Mom one day passing I have had the profound pleasure of meeting some wonderful people along this journey who have become very special to me and have helped me to keep running the race and not to give up. I think especially of my grief counsellor who I meet with each week. I told her today that she was worth more to me than the most precious jewels. I heard on the news today that a DaVinci painting was sold for over 400 million dollars – the most ever gotten for a work of art. I told my grief counselor she was worth more to me than 400 million! And that’s no lie. Without her and others at Hospice Kingston I most likely would have failed long ago in my quest to keep Mom at home with me.
- Another success is that to be a caregiver you have to be organized. You’ve got pills to give, to renew and pick up at the pharmacy. You’ve got laundry to do, food to buy, different supplies to get for Mom, doctor’s appointments to organize, foot care, and the list goes on forever!! I have had to learn to be organized and learn to coordinate Mom’s PSW’s coming and going and be flexible when things change. All hard things to do on the autism spectrum.
- I’m sure I could think of a number of other successes but my brain is shutting down. It needs sleep. But as I look back on what I have written, I have to conclude that indeed there have been many successes in this journey already. It all comes down to how we define success in our life. I know the ultimate success for me will always be to look after Mom till the end at home if possible. But I realize that if things take a different turn than what I think they should be I can remind myself of what has been gained over the past 4 years. So much good has happened. So much good that will last long after Mom is gone. And so I head off to bed a little lighter in my spirit because I have found a new way to measure the success of this caregiving journey I am on with my Mom.