A Taste of Living With Dementia

Hola! I'm back after a wonderful 3 months in Costa del Sol, Spain this winter. I'm over the jetlag and busy setting up an apartment for our daughter, who is moving back home for a while as she searches for an affordable house to buy—a hard task these days, at least in Canada! I've been reading that multi-generational living arrangements are becoming more popular these days, and I can understand why. We're enjoying having her here, sharing cooking, conversation, and ideas for what we'll do next!

But I want to tell you about an interesting aspect of our winter in Spain…

This year, we travelled there with my sister and her husband who has problems with his memory. There are various ways memory loss can occur, and his doctors determined his is a vascular dementia, where decreased blood circulation to parts of the brain cause damage to memory centers. His Mom had received the same diagnosis years ago.

As a pharmacist, I learned about memory loss and how the symptoms often progress as time passes. But too many of us know about dementia firsthand, having experienced various types of dementias in family and friends, with Alzheimer's Disease being the most common type. Before the trip, we had spent lots of evenings with my sister and her husband, sharing dinners and socializing. We noticed he could remember new information only briefly, while he could easily talk about the sports he played when he was a young man.

However, spending significant time with him every day for 3 months was still an eye-opener to the life my sister has been sharing with him for the past few years. Several times, my hubby voiced concerns about whether he could live with a dementia patient every day… all day long. I suppose we all do our best, for as long as we can manage it, and we marveled at my sister's coping abilities and positive outlook.

There are many difficulties that can arise for someone with damaged short-term memory, especially when travelling—like worsening of symptoms from travel fatigue, confusion from changes in daily routine, disorientation from a change in surroundings, unfamiliar foods, decision-making over what to order in restaurants and, for travel companions, fear of them just getting lost in another country.

Here's just an example…

I learned that, despite the need to explain things multiple times, showing respect for the person with dementia is very important. We all need and deserve respect, a basic human right. So, even after the 20th time he asked whether the mountain we could see from our balcony was Lutes Mountain, a landmark near his home, we needed to explain calmly that Lutes Mountain was in Canada, while we were in sunny Spain! Patience and politeness are necessary virtues when caring for a person with dementia. They don't understand why you would be angry or impatient, with no memory of conversations that might have taken place just minutes before. Caring for a person with dementia is an exercise in controlling one's emotions.

But his questions inspired us to find out the actual name of the mountain (part of the range of Andalusian Mountains). There was no point in expressing frustration that he'd already asked the same question, because we knew he remembered neither the question nor its answer. The funny thing was that none of us could remember the name of that mountain either, though we looked it up several times! The exercise created a little empathy in all of us.

The mountain is called Calamorro, by the way (I just had to look it up yet again!!). On a clear day, you can see from Gibraltar to Granada from its summit. In previous years, we'd taken the “teleferica" (cable car) we could see from our apartment balcony up the mountain, then climbed steps carved into the rock to the viewing platform at the summit. We did that excursion 3 years ago when we were all there together. The photo above was taken from the viewing platform at the top, looking toward Fuengirola in the distance.

Support for caregivers

Spending every day with someone with dementia is no small feat, although it does have its rewards. The emotional toll of controlling your feelings, not just anger and frustration, but also the sadness of gradually losing someone you love, are coupled with extra responsibilities, as the affected person gradually loses the ability to do their share of tasks in the household and requires more assistance. But keeping any disabled person in their home is a goal worth pursuing and is an achievement one can be proud of. My sisters and I had done this for our mom, who passionately did not want to go into a nursing home, keeping her in her apartment until she passed away at age 91. It’s something we can feel good about.

The Alzheimer’s Society suggests it’s a matter of balance between the quality of life for the caregiver and that of the affected person. The caregiver needs to respect and satisfy their own needs while considering the preferences and emotions of the person they are caring for and understanding what those are for them, especially as communication becomes more difficult. It’s always desirable to keep the person in their home with familiar surroundings as long as possible, but that is contingent on the caregiver’s continuing ability to give adequate care and cope with their situation.

Support can make a significant difference to the wellbeing of those living with someone with dementia and their ability to continue in this role. This support can come from friends and family members, from professional support workers, or through information from organizations dedicated to educating caregivers both about dementias and how to deal with them on a daily basis.

I think it also helps for caregivers to educate friends and family, not only about what to expect, but about what their needs are and how to best satisfy them. Those of us on the sidelines are often willing to help but don’t really know what is best to do. Communication is key, as always, and asking what support is needed and offering to help is important.

Points to remember

People with dementia are individuals and need to be treated with respect, dignity and compassion, while maintaining their privacy and safety. It’s important to consult the person about their likes, dislikes, and opinions, but they may need assistance in completing the action that has been decided upon.

I noticed on our trip that, although a decision about what to order was made ahead of time when eating in a restaurant, in the confusion and stress of ordering it was easier for him to just order what everyone else was having, resulting in a meal that wasn’t what he wanted. Knowing when to help to ensure needs and desires are met, while continuing the person’s independence, can be a balancing act for caregivers.

Experts recommend focusing on abilities even though they will change over time, rather than losses, as much as possible. Sometimes this means finding new activities and hobbies, keeping in mind that new skills would be difficult to learn. My sister tells me that her hubby is enjoying gardening this spring, something that he used to do out of necessity but wasn’t previously a major interest. I’ll want to share some of my tomato seedlings with him!

Meanwhile, I’ll need to remind myself to check in with my sister more often to see what I can do to make her life easier, less stressful, and more fun…

Additional reading:

Quality of Life--Alzheimer's Society