Things to Remember when Someone you Love Starts to Forget

So many of us have supported a loved one with dementia at various stages and degrees of severity. It can be shocking, frustrating and it is fairly common to feel a profound sense of loss. We wonder what, if anything, we can do to make ourselves and our loved one feel even just a little bit better, less afraid or less discouraged. By the year 2050, the number of individuals with Alzheimers disease is expected to triple to effect an astounding 13.8 million Americans. You are not alone if you are caring for a parent or other family member with dementia and millions more will be facing the same struggles in the years to come. There are some important things to remember when you find yourself faced with this difficult situation.

Each day is a gift. You may feel overwhelmed with getting your loved one to medical appointments, keeping track of medication changes, keeping other family members informed or even making sure your loved one is eating properly. These tasks must be dealt with, no question but try not to let them occupy every moment of the time you spent together. Dementia is a wiley and unpredictable beast with little indication of how quickly it will progress. Make time to listen to stories of experiences or adventures your loved one has had. You may think you know everything there is to know about their life but you might be surprised at new things that come up they may not have thought were important before. When I have worked with clients with dementia, it is such a privilege to hear the words of wisdom, childhood escapades or hidden talents they are willing to share as they take inventory and reflect on their lives. Very often, they have accepted how fleeting the ability to share these memories may be, long before their family has. This realization can be a prompt for sharing things they may have thought mundane or not of interest before. Ask the questions you never had answers to, share your favorite memories of time you have spent with them and tell them you appreciate things that often go under appreciated. 

Ask them what they want. If they are still able to share their opinions and wants, ask them to. Ask them how they want things to be in 3 months, 6 months and over the next year and beyond. Where do they want to live? Who do they want providing assistance? What do they want life to look like if they are no longer able to communicate? What are their greatest fears? Have them write these things down or help them to do so. This will be a blueprint you and everyone involved in their care can refer to as a guide when making decisions about their needs in the future. Find out what financial assets they have and who they want to manage them when they are no longer able. If there are any legal documents that need addressing like a living will or estate plan encourage them to do so or assist in facilitating this as soon as possible. Even funeral arrangements shouldn’t be off the table.  The alska portal is one, online and secure place to store and keep track of all of these items and was created for connecting caregiving teams. If you bring it up and they don’t want to address it, don’t push but at least let them know you are willing to talk about it and assist them if they need your help.

Check your baggage.  One of the hardest parts of being in a position of caring for a loved on with dementia is realizing they now may have serious limitations that make hashing out old differences or healing wounds challenging.  Adjusting your expectations is one of the most important things you can do if you want to optimize the time you have with your loved one. This isn’t to say you have to suck it up and can’t voice your feelings necessarily but it means you have to carefully gauge how capable they are of understanding.  Be ready for responses that may not be what you are looking for before you bring something up. They may not remember a past wrong or remember it in a way that is different from how you remember it. Stress can exacerbate dementia symptoms and may cause more discord than healing. Tread lightly and pay close attention to the responses that you receive.  Be ready to table the discussion and be aware that it may be deferred indefinitely if it only causes additional strife.

Be patient and be kind.  This goes for yourself and your loved one.  Repeated questions, doing things that make no sense and even things that put them at risk isn’t done purposely.  It takes a saintly amount of patience to temper your response while at the same time being left to pick up the pieces of a bad choice or vulnerable action.  Scolding or finger wagging isn’t productive and will only leave them feeling worse about the situation and guilty of the stress they believe they are causing you.  If you are so angry or frustrated that you aren’t able to speak calmly, walk away.  Even if it’s for 1 minute in another room, step away, take some deep breaths and regroup before addressing it again.  Make sure you have some support system in place. A friend to call or support group for caregivers experiencing similar situations can make a world of difference. Caregiver support groups aren’t always available so we added virtual support groups to the alska portal so caregivers everywhere can connect with other caregivers and professionals for support. Both you and your loved one are likely afraid and frustrated with the situation and the more you can do things that put you on the same team as a united front, the better off you will be.  Don’t forget how scary this is for your loved one. They are going through a process of grief and loss as well. If you are not in a position to offer them support, look for someone who can. This can be a psychological professional who is familiar with dementia, a good friend, a family member or a support group for individuals with memory loss. 

You are not going through this alone, it may feel isolating at times but there are millions experiencing the same struggles that you are. Try to remind yourself to find the gifts on this journey and cherish the time you have laughing, remembering and appreciating one another.

Michelle Chaffee Founder & CEO alska