As I sit here writing, on the eve of my son’s 20th birthday, I think back to this day last year. I was having a really hard time (oh great – tears are already starting to flow and I’ve written one sentence!). A LOT had happened – I got married on August 4th and my son headed off to college in Boston on the 28th. My parents were planning a move to Oregon but we weren’t really saying why… I couldn’t stop crying. I was aching and sad to the very core of my being.
Some people thought it was empty-nester syndrome but it wasn’t. I was really excited for Kyle to head off to college – he had worked so hard to do well in high school and was thrilled to be going to Boston University and experience life in a big city. I’d raised him to embrace adventure and change and I knew he was going to be just fine. I was also happy, in a way, that Boston was so far away. I wanted to yell “GO! Save yourself!” as he left – knowing that the coming months, years, who knows, were going to be tough…
The fact is, my dad hasn’t been well. I haven’t shared this in such an open way until today for a variety of reasons. A big one has been to show respect for my dad – who still seems believes there is nothing wrong with him – although he can’t tell day from night and is getting less logical by the day. A close second has been my mom’s wish for me not to.
But today, on the anniversary of his official diagnosis of Alzheimer’s – a result of a spinal tap – I’ve been given the green light to talk about it.
My dad is no longer in a place that he would ever see my blog or know that I’m sharing this part of our lives. My mom has agreed that if it will help me, she won’t ask me to keep it “offline”.
I am hoping that being able to write about what I’m going through will help me through the grief process and perhaps help others who may be going through similar experiences. I’ve seen how much support friends have gotten online as they navigate the “sandwich generation” – where we are parents to our children and dealing with the issues that come from having parents who age. I’ve been inspired and comforted by their stories and their openness and their willingness to be vulnerable and ask for help – even if the only help that can be offered are words of support because there is little that can be done for dementia and Alzheimer’s.
SO much has happened I could write a book. It would make you laugh and make you cry – as most stories like this would. For now, I’ll just get out some of the basics of how we got from who my dad was most of my life to who is is today. I think it will help me to get it out – so even if no one reads past this part, it’s fine. I’m calling it my ‘blog therapy’.
I first asked questions about 5 years ago. My dad didn’t seem himself – he wasn’t engaging in conversations but rather having monologues and telling the same stories over and over again. My mom took him to a doctor who did some basic cognitive tests and he passed with flying colors. But my dad was a college teacher and is really, really smart. Even this past year, when he started getting day and night confused, he was doing well on the same tests because he was somehow able to save the information so he would “pass”. Looking back, we now think things started to change 8-10 years ago…
He started losing words and names here and there, more often turning to my mom to help him with a story. About 2 years ago they went back to the doctor and this time they did an MRI. It was discovered that he had “periventricular white matter” – which looks like white spaces on the brain. My understanding is that it is the brain dying in areas due to lack of blood flow. At that point, they said he didn’t have Alzheimer’s – or “The Big A” as we were calling it.
My parents were living in Reno, Nevada at the time. My sister was in PA and my brother and I were the closest relatives – a 12 hour drive away in Portland, Oregon. I began to suggest they move… My mom resisted because she didn’t want us to be impacted by my dad’s bizarre behavior and my dad didn’t want to… I’m not clear why exactly.
Last summer it was clear that things were getting worse and I talked with my mom more about moving so they could have more support. The writing was on the wall that this was getting worse and we were worried about her dealing with it alone. One day I managed to find a way to “sell” the concept to my dad and he got on board. They put their house on the market in Reno and we began making a wish list for a house and location in Portland.
We also began to look into more specialists to see if there would be something we could do. We got him in to see a neurologist at OHSU in Portland – the day before my wedding. It worked well since the whole family would be here so my mom, my sister, brother and I all went to the appointment. My dad continued to say my mom was the problem and making up things about him… and then going off on tangents that made us scratch our heads.
Later that day they found a house and put in an offer. The acceptance came the morning of my wedding. (As if there wasn’t ENOUGH going on with a wedding – this was all happening too!)
The neurologist said that even though he has the white matter, it didn’t mean he didn’t also have Alzheimer’s and that Alzheimer’s doesn’t show up on an MRI. The only way to diagnose it is in an autopsy or through a spinal tap. Dad agreed to a spinal tap which was done about a week later. We waited with baited breath, praying that it came back negative and that he wasn’t dealing with a double-whammy of dementia.
Sadly, our prayers were not answered. The diagnosis came back as both blood flow related dementia and Alzheimer’s.
It’s been a year since the diagnosis and it is amazing how much we have been through. From tears and disbelief to denial to acceptance to fear that we will get it too and back around again. One doctor told us that when you’ve met a person with Alzheimer’s, you’ve met one person with Alzheimer’s. Every case is different. Our journey is proving to be different from any other we have heard about and my dad is different from any case the wonderful adult day care facility every dealt with or now the home he is in has dealt with.
He went from pretty functional last year – where people who didn’t know him didn’t really notice anything to very obviously not well. I do my best to live in the moment and enjoy every visit I have with him that he knows who I am. I know that his recognition could be gone overnight or slowly fade away…
My parents moved to Oregon in September and everyone said how wonderful it must be for them to be near their kids and grandkids – what a celebration. In my head I thought – yes but… if you only knew the real reason why…
In December we found an adult daycare where he could go to get more social interaction (he was going nuts at home and desperately looking for a new job teaching college). They agreed to tell him he was a volunteer and it was good fit for a while.
By spring things were getting worse. He insisted he was fine and was very frustrated and lashing out. We began to really worry that he would wander away and my mom wasn’t getting any sleep because he was up at all hours of the night. It was like he had the sleep patterns of an infant but in an adult body with the will of a 5 year old – “don’t tell me what to do!” It was visibly wearing on my mom and I was feeling like a firefighter – I never knew when I would be called in to help with a crisis.
We put him in a home in May when it was clear that things had to change for the health and safety of everyone. The actual move in date happened while I was at the SURTEX trade show in New York. Thank you to all the artists who helped me through that tough morning – I thought I’d be ok but ended up on the floor behind my table in my booth in tears until I could get someone to cover while I went to the bathroom to pull myself together.
There have been 2 times that he hasn’t recognized me at first – both times I felt like I was kicked in the stomach. To have your dad look at you with a confused expression on his face and say, “You look like someone I know…” is just beyond words. You wonder “Is this it?? He won’t know me now??” I simply smiled and said, “Because you do know me! How are you today dad?” I then saw the recognition in his eyes and the rest of the visit was fine.
Watching a parent slowly slip away is a heartbreaking experience.
To stay focused on the present and find the bits of joy and humor in each visit is the best way to go – but not always easy. Having a good support system is essential. You learn what you are made of as a person and as a family. Life feels shorter and you begin to really evaluate how you are living your own life and what is and isn’t important.
I have so much gratitude in my heart for all of the love and support I have received from the people who have known about what is happening. As I type I am crying but also feeling a great sense of relief to be able to just throw this very BIG truth that has been hiding out into the world.
Hug your loved ones. Say what you feel and do the things that are important to you. One thing that gives us all comfort is that my parents didn’t wait to travel and do the things they were passionate about until they retired – they had a wonderful adventure of a life for their 50 years of marriage which they just celebrated in June. Whatever time is left will look very different but our goal is to make it as happy as possible and find the silver lining where we can.
If you got this far – I applaud you and must say I’m surprised. I know it’s a bit of a random ramble but when I sat down I decided I would just type what came to me and know that that is what needed to come out for now.
Happy Birthday to my wonderful son and I love you dad!
– Tara Reed