It's been a while, but we're back with our ongoing series by and for loved ones of people with diabetes (PWDs), the so-called Diabetic Partner Follies. Today we're proud to share a post written by Sandy Floyd, who lives with her type 1 husband Vince in the Philadelphia area and blogs over at A Diabetic Spouse. Vince was diagnosed at the tender young age of six months (!) and the complications he lives with bring a unique perspective.
We know it isn't easy being the loved one of a PWD, but Sandy says the challenges they've faced have made them stronger. Read on...
A Guest Post by Sandy Floyd
When it comes to sharing my story as the wife of diabetic husband, this story may be a little different than many of the others out there in the community.
Sure, I'm like other type 1 spouses in many ways. But my world is much different than that of my fellow D-Wives: See, I'm also a caregiver.
My husband, Vince, was diagnosed 32 years ago with type 1 diabetes, and we've been together for 10 years and married for four years.
His complications set in by his mid-20s, long before we were married. Vince developed retinopathy, neuropathy, and hypoglycemia unawareness — quite the trifecta for any person with diabetes!
He relies on the Medtronic Revel insulin pump with the Continuous Glucose Monitor (CGM) to deliver insulin and alert him of potential life threatening high and low blood sugars. But the complications have made things more difficult.
The retinopathy has caused significant vision loss in one eye, and Vince has had many laser treatments done on both eyes along with vitrectomy surgery on one of them. Although his vision is extremely limited in one eye, the laser surgeries were able to correct most of the damage to the other.
For us, Vince's neuropathy hits more at the nerve of our collective pain (D-pun intended!), since it affects the nerves of the body and has been a source of pain for him and the need for me to help out as much as possible. Many neuropathy types exist and you can have a variety of different symptoms depending on the person. Vince lives with peripheral neuropathy, which causes him excruciating pain in all four of his limbs 24 hours a day, along with numbness and muscle weakness.
As Vince's wife, I have to continually accept that my marriage is not what others may consider normal. I've got the same worries as every other type 1's spouse... I worry that his blood sugar will drop without me around to help. This has happened too many times to count. I will never forget when he fell unconscious in his sleep. I awoke to my husband having a seizure in bed next to me. I remember thinking, 'What if he doesn't wake up the same person? What if he has brain damage'? I had never experienced this type of situation before and I was terrified. Luckily, the EMT's arrived quickly and once he was treated he woke right up and was fine. I worry about him having the necessary supplies with him at all times. I make sure he has snacks and sugary drinks in the house at all times. I worry about the expenses we incur from his medical conditions. I worry about many things that my fellow spouses do, however there is a whole other side to my worries and stress.
Thanks to the neuropathy and ensuing severe pain and numbness, Vince is officially disabled and unable to work. I work 50-60 hours a week and carry the health insurance for the both of us. He has become extremely limited in what he can do now with the complications that have occurred due to his diabetes. He no longer drives, as he doesn't feel comfortable with the vision he is left with from the retinopathy. He is also very limited in his ability to cook and clean.
Not only does he have trouble feeling hot and cold temperatures, but the extreme temperatures also cause his pained hands more pain. He has trouble with simple things like putting a belt on and or putting his shoes and socks on, so I have had to step in to help him with these tasks that he can no longer handle on his own.
And then there's the diabetes management tasks.
Preparing and injecting his insulin pump, CGM, and syringes has become difficult for him since developing the complications. He has trouble seeing and feeling the details that are necessary when preparing and injecting these devices, so this is now my responsibility.
The first few years after the complications arose were difficult. We were adjusting to the new disabilities and Vince's new needs. We took it day by day, just as we do now, but we didn't have a routine for quite some time. The complications were still new and they had not stabilized. There were even more doctor visits than there are today, as we were frantically trying to find the right doctor and the right treatment to help Vince get some relief.
Looking back, it was a hectic few years. Hectic in a different way than today. After some time of figuring out how we both needed to adjust to this new way of life, and the complications began to stabilize, we decided that we needed a little more organization in our home so we do not forget the important things that we need to do daily to ensure Vince's needs are met. I made a calendar with the site and CGM changes listed on it and posted it in our home. I change his site every other day and the CGM every 6 days. I need to be sure that I am home to do the site changes and that he does not go without insulin in his pump, so the calendar makes it much easier to see at a glance what needs to be done and when.
There is one other large part to our story that has affected my caring for him, and that is the side effects from the neuropathy medications he takes. When trying to treat Vince for peripheral neuropathy, his doctors tried several different types of medications over the years to relieve the pain. They normally use one or more, depending on how your pain responds. Again, everyone is different.
Unfortunately, during the past five years, the doctors have tried many types of medications and the result is Vince taking seven meds just for the treatment of neuropathy (!). Most, if not all, of these medications, along with others for other conditions he has, state that drowsiness is a side effect. There are also other side effects he deals with, but the drowsiness is what causes him the most trouble. This causes Vince to sleep on average about 15 hours per day. Because of the pain, this time is usually broken up between two stretches; one late afternoon/evening and the other early morning/late morning. If he is having an especially bad day with the pain, he may sleep off and on all day, a few hours at a time. Since he is constantly drowsy from the medications, there are times he does not hear the CGM alert him of his highs and lows. He may also be too drowsy to test himself and take the necessary steps to correct. This causes me to check on him fairly often, whether I am home or at work. We have a routine where he and I check in with each other every few hours throughout the day to be sure he is okay. Then when he is sleeping, I check on him every few hours and listen for the CGM too. If a high needs to be corrected, I will take action. If he is low and is too drowsy to stay awake to take in sugar, I am by his side whether his BG is 70 or 30 to make sure he is taken care of. He normally does not go more than 2-4 hours at a time without being checked on in some way.
As you can see, Vince needs me a great deal to help him throughout his day. There are times I forget that I am not the diabetic. I am just the eyes, hands, and sometimes the brains for him when he is unable to help himself. When we are at a doctor's visit, I tend to speak for Vince. I am so involved that it feels natural to speak for him. I have to consciously stop and remind myself that this is his disease, but it's hard. I am the one injecting, measuring, and correcting. It's my hands doing the work but the numbers and conditions are his. Being a caregiver to your spouse changes your marriage in ways you may never realize until you actually experience it.
But you know what?
It's not all sad and depressing (as much as it may sound from just the summary above!)
We have a lot of emotional stress due to our situation, but our struggles have brought us closer. The obstacles we've overcome and continue to face has made our marriage stronger than I ever thought possible. We are each others' best friend and we truly value every minute we have together.
And so, I guess there's only way to close this out for the Diabetes Online Community: If we can do it, than You Can Do This too!
Thanks for all you do, Sandy! It's obvious Vince is very lucky to have you in his life, and we're all grateful that you are sharing your story and allowing us to be a part of it!
And to Readers: While we're on the topic of Type Awesome spouses and loved ones, don't forget to check out the new Web-based program, Just for Partners, designed specifically for partners of adult type 1s. This program's jointly sponsored by Bringing Science Home and the Behavioral Diabetes Institute, and they need your help in answering some survey questions before the online program kicks off in early 2013!