It All Started With The Toilet Seat

~ Bitchy After 60

This was at least (at least) five years ago. Before we learned that my husband was following in his father’s footsteps and would be diagnosed with Alzheimer’s. Things just started happening, and one of these things was that my husband no longer put the toilet seat down after using the bathroom. This may not seem like much to the average person, but this had never ever happened before and suddenly it was happening all the time. My husband was always very considerate in that way.

In addition, lights were being left on all over the house. Things were being done, to use a favourite term of my mother’s, half arsed or not at all. Any tasks that were started, dragged on and on. When I mentioned these things to him, he got pissy (my term) and defensive. Again very unlike my husband. Let it be known that I was always the bitchy one in this relationship. Conversations became minimal. My husband, who was always a quiet man, became quieter. Content to sit and do a lot of nothing. Days got very lonely.

I won’t lie to you, I was angry. I felt like he didn’t care about anything anymore. Not about maintaining what we built together because there was little or no physical maintenance being done. And, and this is worst part, I felt that he didn’t care about us anymore. That our relationship was no longer important to him. That we no longer loved each other because I was certainly questioning whether we did. And some days I still do.

Now, over two years after his diagnosis, our world has narrowed, complicated by both Alzheimer’s and the fact that my husband has had two knee replacement surgeries and is often not focused enough to do what needs to be done to strengthen his legs. He has mentally and physically gone down hill so much in five years that it is difficult to face. He can still do things, like drive and perform basic errands, cook the odd meal, especially if I suggest what to make. However, the system analyst who could delve into computer programs and lists to solve and correct problems is long gone. He went fishing yesterday with a friend for the first time in ages. He goes to the gym a couple times a week, but honestly, he needs to do more to get physically healthy. I don’t see any inspiring results. He is stooped and slow when he walks, not the man who could lift a cedar canoe up on his shoulders and carry it to the water.

Again, I won’t lie, I still get angry. And sad. I struggle with the state of affairs every day. I resent the fact that we worked hard and saved for retirement with hopes that we would enjoy life during our so-called golden years. I mourn the trips we will never take and the fun we hoped to have. I know where we are headed. I resent the fact that I am only 67 and very healthy and my life will be reduced to being a full-time caregiver before I know it. By the way, the second largest group of people at risk to develop Alzheimer’s is caregivers.  

I know there are people who would shut up, martyr up and rise to the challenge. I am not one of those people. I have no desire to be a martyr. I don’t believe in heaven or saints. This is the only life I have, and I had planned to age with the man I once considered my best friend, although this sentiment now seems like it was a dream from a long time ago. These are my feelings. I can’t even imagine how my husband feels about it all.

Thank you for reading

Photos: MusePrintables.com

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38 thoughts on “It All Started With The Toilet Seat”

  1. Thanks for being honest. I, too, was not one who could just be a silent martyr. My mom had Alzheimer’s and it was just awful. I’m hoping, though, that you can think of some good things coming up. For me, it was when my mom started to lose the anxiety she had all her life…she actually enjoyed life again, in her own way. And, also, when she had to go to a nursing home – as horrible as that is, it change my life.

    We all need good things to look forward to, so do try to plan things that are fun for you.

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  2. So very sorry. Alzheimers is a horrible disease. It doesn’t only rob the afflicted, but their loved ones as well. I hope you have some help or a type of support system to give you the occasional break. Caregiving is physically and emotionally draining.

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  3. Cherish the time you have together! Some people aren’t so lucky. For better or worse he is still your husband.

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  4. Sending hugs to you Jenn. Do you follow the WP blog Midwest Mary? She was caregiver to her husband who had Alzheimer’s for over 10 year I believe. She writes about it sometimes in the blog and has written a few books. You may want to reach out to her. I think it’s midwestmary.com Maggie

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  5. I’m so sorry to hear this but thank you for your frank and honest description of what you have experienced. Altzheimers is a devastating and terrible scourge, not only for the person who develops it but also for the family and caregivers, too. Good luck going forward.

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  6. That’s just so sad. I think your role is the hardest. He is probably unaware of how much he’s changing and you have to sit there and take it. Go ahead and be angry. I’m so sorry you are both facing this.

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  8. I’m glad you felt comfortable being honest. Those who alway want to tie a frilly bow on disappointments aren’t being truthful with themselves or others, and may be doing themselves harm. Life sometimes just sucks. You have a long and difficult road ahead. Acknowledging your pain and anger is healthy. I hope you keep reaching out via your blog for support.

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    1. Thanks Janis. I have always been one to acknowledge my anger honestly. It does help and as things move forward, I expect I will continue to have the occasional public rant.

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  9. I can imagine how you feel – my mother went like that at the end but she was in her 90s and at least I wasn’t losing a partner – you kind of expect to lose your parents one way or another when they get to that stage in life. It made it easier for me to bear when she died as I felt she had already ‘gone’ in a lot of ways before then. I certainly feel for you – it’s very tough for you.

    Worrying to read though as it started to sound like a description of Richard, my ex, my long-time friend and walking partner and my confidante when things are bothering me.

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    1. I remember when my father-in-law passed away, my mother-in-law had said that she had already lost him. It was more of a relief.

      I hope Richard is ok. He may want to get checked. There isn’t a cure but there are medications that help with the symptoms.

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  10. You are very young to be living this chapter in life’s book. Honesty sometimes keeps us sane because although sincere love and friendship exist, care giving is one tough job as many of us know, and it can drain the life right out of you. Enjoy the good moments, lean on family and friends, and seek professional help when needed although that must be the ultimate tough decision. Take care of yourself.

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    1. Oh believe me I have done my homework and have thought through the various scenarios for when they occur. There will definitely be professionals because I am not qualified to handle it all. And there will be more honesty and anger because those things will also be necessary.

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  11. I’m new to your blog, followed you because of the name. I found it amusing. I’m so sorry for what you are going through. I watched both my mother and my mother-in-law go through dementia but from a distance. My sister was a care-giver for our mother and she tapped into local services. One was an adult day care that Mom went to a few times a week. My sister has her own business that she does from her home so that helped out tremendously. Maybe there is something like that near you so that you can take a break. I’d probably feel the same way that you do. Sending a virtual hug.

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    1. Thanks so much for following and commenting. And for the hug. Hugs are always good. My father-in-law went to adult daycare in Ontario. There doesn’t appear to be anything similar that I know of here in Nova Scotia, but there is home care that I plan on taking advantage of when we get to that stage. I am hoping we are still a few years away from that but you never know.

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  13. I’m so sorry, Jenn. it’s tough for us to watch our loved ones go down this path. I experienced this several years with my mom. She lived a decade after my dad passed. It started gradually with little things, but then it became really hard to manage. Mom never wanted to move in with us, but then she’d fall and hurt herself. She went through a string of caregivers, not because whe was mean and ornery, but because she’d heal and want them out of her hair.

    I’m sure you’ve already thought of this and your husband might be resistant, but if your finances allow, perhaps someone could come into your room for a few hours each day to give you some respite. It’s impossible to care for a loved alone for sustained periods of time.

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  14. I appreciate you writing about this here and am sorry that you’re going through this. I know that being the primary caretaker for anyone is a challenge but sometimes falls on you. You seem to understand how and why the disease is progressing so that’s something. I remember that when my FIL was diagnosed and subsequently succumbed to the disease it wasn’t easy for my MIL. I’ve seen someone burn herself out on caregiving so I hope you’re able to find ways to get your husband to be more physically active and that you find ways to give yourself the respites that you need to keep going. Take care.

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    1. Thank you. For me, writing this is a necessary therapy but also to let others know that it is ok to be angry. Anger is part of the process. One thing I did was stop nagging my husband because it really wasn’t helping. As things progress, there will be more anger and frustration but when push comes to shove, in these situations we all do what needs to be done. Taking care of myself will be one of those things.

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    1. Thanks Margie, especially for the hugs. I read Still Alice as well, quite a while ago. I also read several informative books since we found out. Right now I am taking it one day at a time. It’s not too bad yet and I am hoping for a few more years before it gets difficult. You know plan for the worst and hope for the best.

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  16. I think you’re handling it beautifully even though we don’t know eachother. There’s a mourning period because you’re right. Your plans for the future did not include this disease and it impacts the entire family and the relationship between you. I cared for 2 family members with Alzheimer’s and it wasn’t easy. Eventually they had to go into a group home because I couldn’t manage and it was sad because some days they remembered me and some days they did not. It was my mom and her sister which is a totally different dynamic, but still I understand. Hugs to you

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  17. New subscriber, and I hate to put a “like” on this blog because it actually broke my heart in empathy. Thank you for your honesty. I actually can imagine the confusion and anger before getting a diagnosis (like, “Is he depressed?), and I cannot imagine the emotions after the diagnosis. This is very real, very difficult, and since I’m your age but starting a relationship, it is a specter we all carry, I think. I follow several people who are of the type “don’t be a Debbie Downer” and I understand *that* perspective, too. But I’m of the ilk of “don’t be a martyr” and that there is value in discussion “verboten” things, in so many ways: as a catharsis for the writer and as a beam of “you’re not alone” light to others and as a way of educating others. Glad I stumbled upon your blog due to a random comment in someone else’s blog.

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    1. Thanks for subscribing and commenting. My husband doesn’t really communicate much so I have no idea how he has taken to all this. He just seems to be letting it happen. Me on the other hand, I get him on medications to help the symptoms, I suggest (try not to nag) that he stop scrolling on his phone and get off the sofa and do something, and I have the odd rant. I do what I must.

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