Welcome to our CaringBridge website. I’ve created it to keep all our friends and family updated about Steve. Thank you for being here! Steve and I are grateful to have your support. Please read the introduction to the website, Steve’s Story. Then, visit often to read the latest journal entries, check out the photo gallery, and write us a note in our guestbook! Please share this with anyone you think might be interested. I don’t have a ton of e-mails, so forwarding to others will help to spread this info. Also, please know that while we may not be able to respond to calls, e-mails, and texts at times, Steve and I are grateful for all of you in our life and your messages mean the world to us!
Hello All
It’s been a while – actually over 5 years since Steve was diagnosed with Early Onset Alzheimer’s, and we communicated with you all. At that time, Steve was very stable, lots of short term memory loss, but in most ways – still the Steve you know/knew. The first few years were very similar, with slow and continued memory loss, some loss of stability, more difficulty with use of a car/directions (which were never his strong suit), and reduced interest in going out (which had only increased once Covid hit). He stopped driving about a year before Covid, and Rose now has the Accord, and is still driving around the neighborhood at 87 years young.
However, this all changed in November 2020 when Steve got a fever that all the doctors thought was Covid – but was actually a massive Staph infection that was running rampant in his body. After 3 weeks of fever and then swelling in his leg, I took him and he was quickly admitted to the Hospital. He had 2 stays there for a little more than 2 weeks combined. It was a tough winter, he needed ongoing antibiotics, which I administered through a pic line through mid-January, and other various medical issues. He has lost close to 70 lbs. at this point – and is now medically/physically healthy and continuing to gain strength. Unfortunately, the hospital stay has triggered a significant decrease in his mental state and increase in ALZ symptoms. Starting in early April, Steve began suffering from some pretty severe anxiety, and some depression and fear. Separation anxiety from me is the strongest right now along with fear of getting in the car, so we have been home a lot most of the past few months. We are working with various doctors to try and find the correct pharmacology to help ease his symptoms and get him in a more comfortable state, we’re on our third med – let’s hope third time is a charm.
As you may know, Alzheimer’s is a degenerative disease, so Steve’s not going to get miraculously better, but we are hoping to get him to a new plateau where he is more comfortable in his skin, less anxious and not afraid of everything.
Some days/hours in a day, Steve will get clarity – and it will be the old Steve – you may have experienced this when he is on Facebook and posting funny comments or saying hi and let’s get together. Or you may have been one of the lucky ones he decided to call or text to chat with about how you are doing – or the old days. If you see a missed call from Steve – call right back if you can – these periods don’t last that long, and when he is on- it will be a great few minutes with him. We are hoping these periods of clarity will continue – but those times are getting farther apart. He still knows me and Stanley, and remembers so many of his friends and experiences. We listen to a lot of 70’s and 80’s music and he sings along.
I have hired a care giver for a few hours twice a week. Steve’s mom - Rose - is spending about 4 hours with him every Thursday, so I can get my acupuncture, run errands, and maybe grab a lunch with friends. She has been great through these past few months. She makes them lunch and they reminisce about the old days and she tells all the old family stories. In the last few weeks, we have begun with the help of Scott Barliant and Jeff and Katie Groves, “Monday Lunch with Steve”. We have had 2-4 people for lunch with us and spend a little time visiting. Sometimes I cook, sometimes the guys bring something yummy, and we have had really nice times. I find that a few people at once is actually easier on Steve. He doesn’t have to worry about answering questions one on one, but he can listen, observe and add a wise crack or joke where appropriate. We also have had some visitors over the weekend, and while it’s nice, we sit out back and visit for those with Covid concerns.
Often CaringBridge pages are for those severally ill, with probably a short period of time. That is not the case with Steve currently, though with ALZ, you just never know. So, I thought it was important to let you all know of the changes and that things are continuing to slide more quickly than they have in the past 5 years. I will be able to give you updates through this site and you can comment back and everyone can share their thoughts - or even an old favorite story about Steve. I will share the comments with him.
This is a hideous disease. It has taken so much away from Steve and his relationships with all of you. We are blessed with some of the best friends. You have done so much for us over the past few years and especially these past few months, and we thank you and appreciate you.
Our needs are ever changing, and at times I don’t even know what we need. Please see below or check out the Ways To Help tab and consider sending your love and support our way.
· MAIL: Send cards via snail mail - especially anything with a golden retriever - he loves his Stanley, and who doesn’t love getting mail?! (email sharonark@yahoo.com for our address)
· MESSAGE: Send notes via CaringBridge Guestbook.
· VISIT: Please contact Helene to set it up or join a Monday Lunch with Steve.
· CONTRIBUTE: While a TRIBUTE on this CaringBridge site goes directly to CaringBridge, please consider helping to fight Alzheimer’s with a monetary contribution to the Alzheimer's Association, IL (
https://www.alz.org/illinois) which helps to provide Alzheimer’s care, support, and accelerating research. Go to the WAYS TO HELP section of this CaringBridge site to get donation information/links.
We appreciate all your love, support, and prayers. The best way to be in contact at this time is through the CaringBridge site.
With all of our gratitude and love,
Helene and Steve
