Safeguarding Family Relationships in Dementia Care
Our relationships tend to be our most cherished possessions in life. Spending time with our spouse or family member fills us with joy and contentment. So when our loved one starts behaving in a way they never have before, we can’t help but wonder what is going on.
If we find out that these behavior changes are related to dementia, your relationship and roles within it are likely to change for good. Knowing how to safeguard your relationship as the disease progresses is vital to keeping and maintaining the special bond you have.
How Dementia Changes Personalities
When your spouse or family member begins to change it can be difficult to understand his or her behaviors, and you might think that the changes are intentional. You need to know that this is not the case, since dementia alters the brain structurally and chemically in a way that can significantly affect a person’s character.
Chemical changes in the brain can cause sudden mood swings and personality changes throughout the day. A person that has been an outgoing extrovert all of their life can suddenly withdraw and show more introvert behaviors, and vice versa.
It is critical for you to understand that you should not to take their actions personally, as these personality changes or difficult behaviors are caused by the disease and not the person. We understand it can be difficult to remind yourself of this when things get tough, but the better you get at remembering that aspect, the better your long-term relationship will be.
Why you Need to Know What Dementia Does to the Human Brain
Understanding what happens to the brain with dementia will help you avoid feelings of resentment, and will protect your relationship from being damaged. The more you learn about dementia, the better off the two of you will be.
Start by learning the type of dementia and stage your loved one is experiencing, as it will help you understand what they are able to do and not do.
In example, you might think your spouse is being stubborn as you try to tell them something, when really their ability to comprehend spoken words has been reduced as the left side of the brain has been damaged by dementia.
Similarly, if you don’t know that the person in your care might have a vision problem, it’ll be much harder for you to understand why they might eat off of one side of the plate but not the other (Tip: turn the plate around and see if that helps.)
Simply said, the more you understand about what happens to the brain of the person in your care, the better you’ll be able relate, anticipate future behavior changes, and reduce your own levels of stress and frustration.
Always Remember: People living with dementia are doing the best they can. Your understanding of that will significantly impact the quality of their life and yours.
How Dementia Can Change Spouses' Responsibilities
There’s no denying it - the changes your loved one with dementia experiences will affect the roles and responsibilities between you and your spouse or family member.
For example, even if your husband has been taking care of the finances all of his life, when dementia sets in he may no longer be able to balance the checkbook anymore. Similarly, if your wife has been responsible for the cooking all of your time together but she can no longer safely do so, you might be forced to take on that responsibility and learn to cook.
The earlier you think of these upcoming changes, the better off you’ll be:
- While your spouse is still cognitively able, consider having them show you some of their processes
- If that doesn’t work, could you get outside help (such as an accountant for your finances)?
- Could you take a cooking class early on if you think you’ll have to take over kitchen responsibilities at some point?
The more you think ahead, plan and prepare for changes to come, the more likely the two of you will be able to succeed together.
How to Arrange Your Environment to Increase Caregiving Success
When a person is living with dementia and their brain changes, it can become very difficult to follow previously known sequences and routines.
In example, a gentleman that brushed his teeth and combed his hair every morning might now walk into the bathroom and not know what to do when he stands in front of the mirror.
When you notice situations like this, you can help your loved one with dementia by setting up their living space with visual cues. Plan ahead and prepare the environment for the outcome/experience you are trying to achieve at that time of the day.
So instead of having an empty table in the mornings when your loved one wakes up, set it with a newspaper and cup of coffee (or whichever morning routine they like.) For the gentleman that can’t remember what to do in the bathroom, lay out his toothbrush, toothpaste, and comb by the sink. Seeing these items will increase the likelihood of successfully completing this self-care sequence.
Note: As the dementia progresses, at some point your loved one with dementia will no longer be able to recognize objects and their intended uses, which can lead to dangerous situation and potential harm. We therefore strongly recommend to always watch and support them while doing these tasks, but encourage them to do as much by themselves for as long as safely possible.
How to Design Each Day to Offer Comfort and Stability
Similar to planning ahead for each task, planning ahead and mapping out a set routine for your entire day will help you both reduce the chance of unnecessary stress.
Here are a few steps you can take to design a successful day:
- Make a daily schedule and follow it
- Add in activities you both enjoy, such as dancing to your favorite music
- Having more active activities earlier in the day and calmer ones in the evening will help you both wind down at the end of the day
- Is the person in your care an introvert or extrovert? You will have much greater success with activities if you can adapt them to the person’s unique likes (and avoid dislikes)
- Include leisure time for both of you to recharge
Activity Ideas You Might Be Able to Enjoy Together
Did you and your loved one with dementia have an activity you used to enjoy together? If it’s still safe to do so, you might want to consider picking it back up. Engaging activities can be great stress reducers and a little “workout” for the brain, so we’ve put together a few ideas for you below:
- Ballroom Dancing – a fun activity that has shown to decrease your risk of getting dementia, as it engages you physically and socially (it gets your heart pumping, exercises your brain by having to remember steps, and has wonderful social benefits by spending time with fellow dancers)
- Play tennis
- Pet interactions: Interacting with a friendly dog or cat has calming effects on most people, and encourages older people to share stories and memories of their pets
- Think about the things they always loved and try to integrate those into your day
We also recommend setting up activities your loved one can still safely do by themselves, possibly giving you a short break to relax.
While “busy-work” projects can be fun, the best activities are the ones that let the person with dementia contribute, making them feel valued and needed. If you get creative and put together an activity like that, not only will you bring joy to the both of you but also a wonderful boost to your loved one’s self-esteem.
Keys to Dementia Care Success
As we said earlier on, the more you know about what is happening to the brain of your loved one living with dementia, the better off you’ll both be. Another critical factor is knowing who the person is, what their career was, and what their likes and dislikes are. Combining that knowledge with what you know about the way the brain is changing should guide your daily interactions.
Learning how to say or communicate things to increase his or her chance of understanding, and the way you approach a person with dementia significantly increase your chances of having a “good day” as a caregiver.
Why Saying "I'm Sorry" Will Strengthen the Bond Between You Two
Caregiving is hard, and there will be times when friction and misunderstandings are inevitable. If you can learn to let go, not take things personally, and say “I am sorry” no matter the situation, you’ll be that much stronger and capable of handling this tough road ahead.
Understand that your loved one with dementia is struggling as well, particularly in the earlier phases when they’re aware of their loss of abilities. Don’t criticize, but learn to “go with their flow” and let things go.
A quote we recently came across says it best: “Apologizing does not always mean that you are wrong and the other person is right. It just means that you value your relationship more than your ego.” – Author Unknown
You Can't Be On the Dementia Journey by Yourself
As hard as it might be for you, the earlier you understand that dementia is a journey you cannot take alone, the better your outcome will be. You cannot do it all, and you have to take good care of yourself as a caregiver in order to truly help somebody else.
If you have not done so yet, we strongly recommend joining a support group of dementia caregivers. Connecting with and learning from other people who are going through similar situations is an invaluable resource. You can find local support group chapters of the Alzheimer’s Association by clicking here.
Remember that you will need someone to help support you, both physically and emotionally. Don’t try to be the Lone Ranger - even he had Tonto.