Ensuring Our Home Is Accessible for My Husband With Hemophilia

How two small changes have improved this family's quality of life

Alliah Czarielle avatar

by Alliah Czarielle |

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Home improvement is a popular hobby here in the Philippines. Over the past few years, online communities dedicated to home decorating and renovation have sprouted up all over social media. Lockdown boredom inspired people to find new hobbies and pastimes, and as work shifted from office to home, many felt an unavoidable need to make their homes more livable.

My husband, Jared, and I caught the home improvement bug, too. We fixed up our living space not once, but three times (!) — once when we were still living at his old family home, another time when we moved to a tiny condo, and yet again when we  finally moved into our current home.

My husband, daughter, and I now live in a family home with three floors. We feel blessed to be here, since it’s just the right size for our little family. We have ample space to move and lounge around, but it’s not so big that cleaning is overwhelming.

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One thing we took into account while decorating was the accessibility of spaces. Since Jared has hemophilia B and a seizure disorder, we wanted to make sure he would be safe, and that he could still be productive when he has ongoing bleeds.

When we were living in a condo, everything was accessible for him because it was such a small space. We could all see and hear one another from anywhere in the unit. Our main living space was one huge room, and we could see in and out of the two separate bedrooms when the doors were open.

Whenever Jared had a bleed and needed to rest in the bedroom, I could talk to him from the living room. And since the kitchen was just a few steps away, he could easily get up and help himself to a meal anytime he pleased, even while recovering from a bleed.

But now that we are in a bigger home, there is much more division between spaces. Our common spaces are located on the ground floor, while the bedrooms are on the second and third floors.

More space means extra privacy for us, so we can sleep more comfortably at night. But it also creates a feeling of distance and isolation, especially if one is cooped up in a bedroom for too long, as Jared often is while recovering from a bleed. Not only does Jared feel isolated from the rest of the family, he’s also unable to help out, even in ways he physically can, simply because he is logistically impaired.

To avoid this, we’ve made the following adjustments:

1. Placing a day bed in the living room instead of a regular sofa.

Most of the important events in our home happen in our common spaces. Jared prepares food in our first-floor kitchen, which is connected to our dining and living spaces. Our daughter claims the entire first floor for herself when she plays. Our dog is also allowed in this space. Placing a day bed in our living room allows Jared to stay downstairs and take part in the action even when he needs to rest an injury.

During his most recent bleeding episode, Jared stayed on the day bed so he could do his work from the living room. By doing that, he was able to help look after our daughter and assist with some basic chores, such as folding clothes. He was even able to prepare a meal for the family — all from the comfort of his resting spot!

2. Keeping a four-legged cane handy in case of a bleed.

When picturing the owner of a four-legged cane, we often think of an older person who has difficulty walking. For instance, Carl from the Disney movie “Up” uses a similar cane with tennis balls attached to its feet. Most people don’t think of a young father like Jared. But after having a conversation about mobility aids, we decided a cane might be helpful.

Now, with the help of his four-legged cane, Jared can gradually mobilize an injured joint with less difficulty. He’s even able to go up and down stairs and between our bedroom and the common spaces without the fear of straining a joint or muscle.

We’re also considering purchasing a wheelchair soon for added mobility in the event of a bleed. However, Jared seems to prefer a basic computer chair, since it’s more compact and can roll in all directions.

With these simple adjustments, our home is now much more accessible!

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.


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