Good Decision-making Is an Important Trait for Caregivers
My wife, Jill, and I recently bought a new car. While this might not seem related to the Huntington’s disease community, it actually is, because it involves decision-making, a big topic for families who deal with the disease.
I’m thrilled about the new car, as well as another important development in our lives. I found a new job, which means we’ll be moving to the East Coast from the Midwest this summer. This is fabulous news because we wanted to live closer to our daughter, Alexus, who is HD gene-positive like Jill.
Being closer to Alexus means we’ll see each other more often. That is important to us, because when family members have a rare terminal illness, time together — and time in general — are precious. We plan to visit each other more often, which makes us happy.
Jill and I had shared a car for many years, which wasn’t easy. Because we work close to each other, I could drop her off before I headed to my job 10 minutes away. But she won’t be joining me for a month after I start my new job, so we needed a second vehicle.
Buying a car is a simple process for Jill. When she is ready to do something, she’s already weighed the pros and cons. She’s already done all of the research to find the safest and best option for our family at the right price. I didn’t have time to do much research, so I’m glad she did.
She told me beforehand that she wanted to go into each dealership to test drive several vehicles and window shop. That way, we could compile all of the different offers and figure out the best deal.
As we walked into the first dealership, I noticed a look on Jill’s face that I’ve seen before. It told me: “This is where we’re buying the car, because I’ve looked at every deal out there, and this is the best one.”
How do I know this face, you may be wondering? From years of experience. She knows I need to see options, ask questions, and do research. She knows I need the experience of shopping to understand what I want, which is usually what she has already decided she wants. But she understands that this is my process. Because I trust her, we didn’t have to engage much in my process this time around.
The next day, as we were signing the paperwork to buy the car, Jill leaned over and said that at some point, I’d need to take over researching big purchases because she may eventually be unable to do it. She knows her decision-making skills won’t be as sharp as they are now.
Since being diagnosed with Huntington’s in 2018, Jill has been trying to prepare me for being a caregiver. She’s explained insurance, medical information, and a multitude of other things I’ve never previously had a reason to understand. She’s gently reminded me that as a caregiver, it’s important to comprehend what an insurance company tells me, or to be able to talk to doctors about what’s happening.
Every time Jill reminds me that I might need to take over whatever she’s doing at the moment, I’m equally saddened and amazed by her. How many people can talk so casually about their future like that? Or acknowledge that one day, her mind won’t be the same as it is today?
Jill knows she needs to tell me these things so that when the time does come, I’ll be ready for anything. She knows I need the experience of getting ready to be a caregiver and a decision-maker.
I know a day will come when I’ll need to do all of the research for big purchases, and I’ll need to be up-to-date on medical and insurance information. I know that day will come, but thankfully, it’s not today.
Today, I can just be happy that we have a new car with heated seats, and we’ll be living closer to our daughter. Today, life is good.
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Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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Deborah Seed
I loved your article. My partner has been losing his executive function -- the ability to evaluate different options, make decisions etc -- for quite some tiime. His thinking has become rigid: it's either this or that. No grays.... However, when I take the time and make myself very patient, I explain the options to him... He understands. and by George he's still able to act upon them. For example, phoning an insurance company to insure his car for one month.
Thanks a lot for your enjoyable article.
Carlos Briceño
I am so sorry to hear that your partner has HD. I feel for you and especially feel for you that his executive functions are diminishing. That must not be easy -- either for him or for you. I am happy to hear that you are being patient with him. What a blessing for him that you are there being so patient and helpful. I'm heartened and inspired to hear that. Keep up the great work, especially in explaining options to him.
And thanks for your kind words about the article. I appreciate that! :)
Pam Westman
This hits home. I have HD. My husband and I have been able to keep an open line of communication regarding what I can do and what I feel like I don't want to responsible for anymore. Just this past couple of months a family member with parkinson's gave a $50,000. donation to a university and leased a vehicle without his wife's knowledge. He can't drive and they already have a new vehicle but my sister-in-law is in over her head and struggling. How nice it would've been to communicate prior to this point. As I type I realize his parkinson's came on really fast so ... Either way, my husband and I did have a process in mind of when I would stop managing certain things. Basically, I took care of the entire household and it's been a gradual process. I bathe, do dishes, and do just my own laundry. He does absolutely everything else in the house now. He's a keeper. ❤
Carlos Briceño
My heart goes out to you because you have HD. This journey of dealing with it is not an easy one, but I really appreciated what you shared. It is very wise and practical. It sounds like your husband is a wonderful man, and I'm happy to hear that he is a keeper. Please know that I understand the situation you're in and am grateful for your courage and for what you wrote as I hope it inspires others to deal with their situations in similar fashions, which is to acknowledge the truth of the situation and then adjust so that decisions that are made are not made from unhealthiness but from love and protection. Take care. I will be praying for you and your family.
Karyn Robertson
I always appreciate these informative news articles. The comment from the person about the family member who made financial decisions and purchased items without his wife’s knowledge struck home with me. My husband has HD and has made financial decisions that have devastated us financially. Early on he was in total denial of the ramifications of this disease on his abilities. And still to this day he is unwilling to acknowledge the progression of the disease and its impact. He will not voluntarily relinquish control of accounts in fus name. He has opened new credit cards in his name. He has “fired” his neurologist because the doctor reported concern to the motor vehicles department i know he is scared of the progression of this disease and the loss if his independence. It has been difficult to find someone to assist us, and especially me as his partner, on how to compassionately help him and i address these issues so he is not more scared and is left feeling helpless because some items are now handled by me. Reading the articles you post and other’s responses is helpful and comforting to caregivers to know they are not alone and that gentle patience, while challenging at times, does make things better. Thank you!!!
Carlos Briceño
Thank you, Mrs. Robertson, for what you shared. I'm so sorry to hear all that you are going through. It's clear that the disease is affecting your husband in an adverse way. That is not easy to deal with. I hope you are able to understand that who he is is not how he would probably normally be if he didn't have HD, and, as difficult as it is, I hope you are able to grow in patience and understanding and mercy. I also want you to know that, as difficult as HD is for him, it's also probably equally difficult for you to deal with everything that you deal with. And so please know that I hope you have people in your life who treat you with patience and understanding and mercy as you navigate the world as a caregiver. Whatever happens, if you are able to accept all this with love and mercy, your life will take on a deeper meaning and what may be painful can then be transformed into something beautiful.
I don't wish anyone to suffer, but, if you are going to suffer, then it might as well be drenched in love, and, thus, instead of transmitting suffering, you transform it into something that is sweet and fragrant, rather than bitter or depressing or angry.
Take care!