When Life Changes
I have been happily married to my husband Tom for 37 years and about three years ago I started noticing very unusual behavior from him. We had two cats, Sneakers and Pearl, that he truly adored. Sneakers had a seizure one evening and we rushed him into an emergency vet. Tom was too upset to go in and while I was with the vet, they informed me I needed to make a decision about whether or not to euthanize Sneakers. It was very tough, but by the time I got back to the waiting room, Tom was already sitting in our car because he could not stop crying. I was quite shocked as I’d never seen my husband cry in all the years we’d been married – but what surprised me more was that he continued to cry for three days straight. Tom is a man from a generation’s past where it just wasn’t a thing to cry.
Unfortunately, not too long after that our other cat Pearl had a similar situation occur. One day as she jumped onto the kitchen counter she collapsed, and I received a frantic call at work from Tom who in tears asked me to come home immediately. Once again, we made a long trip to the vet with Pearl on my lap and Tom driving with tears pouring down his face. This time after she passed away he cried for four days. Every time I looked at him he was crying. I noted this again and was somewhat in disbelief.
Then a few months later we went on vacation with our family. The family all joined us and Tom was behaving very strangely. We had been renting a timeshare for more than 15 years and had been going back to the same place every year. Tom got lost on our way there and couldn’t remember the area once we got in. He couldn’t identify with any of his surroundings. We always had a red laundry bag that I hung on a door for dirty clothes. He kept asking me where it was. He told me he had packed his shaving gear but kept asking me over and over about where it was. It actually turned out that he had not packed it but even after discussing it, he continued to bring it up and was insistent it was somewhere in his bag. My sons didn’t understand what was happening and got upset as Tom eventually asked to go home – it caused a lot of confusion and pain and at that stage none of us knew what was going on.
Tom’s sister called one day and I mentioned I thought something was off and that he was repeatedly forgetting things and she immediately said it was probably due to the medication he was taking. But I told her that somehow it felt more than simple forgetting. My husband has always been a brilliant and meticulous man, and when he started asking how to spell words and making simple mathematical errors, it all seemed even more unusual to me. I know I often mix up my two sons names – but forgetting who people were or are seemed foreign to me.
And it wasn’t just me. Tom had retired and was really enjoying a calmer job with a local theme park. One day he returned from work and had received a “warning notice”. He was so humiliated by what he called a personal attack on his ability to do the job. Unfortunately, he had violated a policy, and became devastated how much management was watching him. He had a few other small situations occur at work and was eventually told if anything happened again he would be terminated. A month later he lost his job, and it completely broke Tom. I realized we should probably go to a doctor to get an opinion on everything that had been going on. Fortunately, I work at a hospital and I asked all around for advice or tips and ended up taking Tom to a memory clinic. They were very thorough – first we saw a psychologist who performed a thorough mental test. Then Tom was checked for his balance, hearing, and had some other scans done as well. They also recommended us joining a group with other couples to discuss what we were going through. This happened every Tuesday for about 6 months with a member from the Alzheimer’s Association, and I finally realized this all may be something much bigger.
I realized I was about to be my husband’s caregiver as he became diagnosed. The support and process was extremely useful and valuable – and I don’t know how I would have done it if it hadn’t been for the clinics and doctors we first met with. All of the patients in the support groups were at different stages of Alzheimer’s and Tom seemed to be more present than others in our groups. We were given valuable information and through chatting with others in this group, we didn’t feel alone and it was immensely less frightening as we entered this new stage in our lives together – navigating through a disease neither of us knew anything about. Tom thought it was a waste of time from the beginning and often denied needing any support – but one of the most important ways to help someone who’s been diagnosed with dementia or Alzheimer’s Disease is by interacting with other people. Sitting and watching TV, and being alone is not the answer, and that is what Tom seemed to do since he lost his job. I bought him word-search books, and found myself reading blogs, searching online for other support groups and tips to help. The doctor administered a drug called “Donepezil” to slow down the process and the x-rays proved the shrinking of the hypothalamus.
My husband has never forgotten my birthday, or our anniversary. In fact, he always used to spoil me and went above and beyond with gifts and surprises. I look back on our fond memories often and cherish them as Tom hasn’t remembered my birthday or our anniversary since this all began. The changes are happening daily. He gets frustrated and moody, yet at the same time he is much more calm and relaxed about life. He writes most things down – it helps enormously with everything. His long-term memory is still relatively there today and photographs help us a lot in daily conversations. But his short-term memory is almost completely gone.
I met the most wonderful woman, Jenny Monroe, through our community and network. We have become very close and bonded over the struggles in recent years. Her dad, Al, suffered the same disease and she decided to join the Alzheimer’s Association and join thousands in raising funds for the group through a walk. She went above and beyond with having a day at her home prior to the walk where we made flowers to represent who we were walking for.
I made my yellow flower, as a caregiver in honor of Tom and others did it for Jenny’s Dad, Al.
The walk was incredible and I actually get goosebumps just thinking of to this day. Thousands of flowers blowing and swaying as we quietly walked around Lak Eola in Orlando, all with different meanings of support and how this disease effects so many:
Blue Flowers — I have Alzheimer’s
Yellow Flowers — I am supporting or caring for someone with Alzheimer’s
Purple — I have lost someone to Alzheimer’s
Orange — I support the cause and a vision of a world without Alzheimer’s
This past Christmas, Tom’s family came to visit from all over the country. We rented a little apartment and I was not aware that it was double story, which was a terrible mistake. On Christmas Eve around midnight, Tom thought he was going to the bathroom and accidentally fell down 16 stairs in the house. It was a miracle that he didn’t break anything. I got him to the Emergency Room and they took tests and x-rays and thank goodness somehow he survived it all with only a massive hematoma around his side. Sadly, he was unaware of any of the rules and all he wanted was to get up and leave. He pulled all his drips out and started bleeding over the room. These are the parts and time that are so difficult – he wants to do what he wants. He can’t even remember that he fell. Routine means everything – keeping it the same – no changes because that just complicates everything. They told us all of this in those group meetings and usually I try to listen but with family coming and Christmas I thought it would be fun. I have learned that life has changed and it will get progressively worse – I stick to my vows “for better or for worse” and know he has been by my side in all that I have been through, and so we will solve this together. As his caregiver I am blessed to see him change and become somewhat more “childlike” – back to a simpler mindset.
I hope by sharing my journey that this will help someone who is navigating some of the same experiences. I thought I was alone and had to battle this but have been absolutely surprised by how much help, advice, and actual people there are who can be there for you. Strangers, friends, family and many always give bits of advice and for this I feel huge gratitude and most of all now they know they are willing to help, and do things for us.