By Shari Flight
Imagine that you and your spouse have worked most of your adult lives either as a stay-at-home parent or an employee for a company. You save your money and plan a beautiful retirement life together full of family, travel, and free time. You have big plans for how you will spend some of the best years of your life as you age alongside one another. But what if things take a turn and your spouse is diagnosed with one of the many types of dementia that exist and your plans for retirement must change? Unfortunately, this is the case for many spouses across the United States. According to a 2009 study, 75% of people living with dementia are being cared for by family, with most of this percentage being care provided by the aging spouse.
Of course, this is a less than ideal way to spend the remaining years of your lives together. However, the entire journey does not need to be as stressful or life altering as it is for most spouses. So, how can you make this dementia journey that you are now on an easier and more joyful experience for everyone involved? Here are a few tips to assist you:
1. Talk about it:
When you or your spouse are diagnosed with dementia, talk about it. It is common to avoid conversation because of the emotions that come along with the diagnosis. However, talking openly about the diagnosis will help you to better understand your loved ones wishes as well as give you a chance to share your own wishes if you have been diagnosed. Ask them their thoughts on home care services and preferred providers, explore memory care communities if this becomes a need, update legal paperwork (i.e., MOLST, POA, HCP, and Living Will), and talk about their wishes for when the time comes that they are actively passing. Side note: if diagnosis happens later in the dementia journey, or if the conversation visibly increases dementia related symptoms, do not have the conversation.
2. Work with a Conscious Dying Coach:
They can assist you in making sure all of you or your loved one’s wishes are known. They help you to navigate the often-feared topic of death by putting your wishes into motion. For example, what are your spiritual wishes, what are your emotional wishes, and what are your relational wishes? A local Conscious Dying Coach to us is Aimee Yawnick. Take a look at her website to learn more about her services!
3. Research Home Care Agencies:
Research local home care agencies or reach out to your local council on aging for these resources. Look up online reviews of each company. Ask your loved one what is important to them when hiring an agency.
4. Tour Memory Care Assisted Living communities:
Like home care agencies, do your research to learn more about the options that are available. First, talk to your loved one about their wishes if they were to ever need to move to a community. What is important to them in this type of environment? Create a list of at least five communities to tour and choose your top two based on your loved one’s wishes. If they are open to it, and it does not cause them any anxiety or agitation, bring them along for the tour to engage them as part of this planning process. This allows you to choose the community that will be the best fit for your loved one rather than having to choose one quickly in a crisis.
5. Ask for help:
Upon diagnosis, create your support system. Just because you are the spouse does not mean you need to care for them on your own. It is okay to ask for the help of others because this can reduce your risk of caregiver stress and burnout. Reach out to your children, family, friends, and religious community. Ask everyone to take part in their dementia journey by coming for visits in the home, taking them out, giving them a call, and checking in on you to see if you need an impromptu break.
6. Accept help:
If you are being offered help from anyone at all, take it! According to a 2019 Health Affairs article, spouses experience more burden, depression, and anxiety than other family caregivers do. It also found that 66% of the spouses in the study were in poor health. As the spouse, it is far too common to put your own mental and physical health aside. How can you properly care for someone when your cup is empty?
7. Respect their wishes:
If you had the conversation about their wishes when they were still able to verbalize them, make sure you respect this when the time comes. It is common that the spouse pushes their partner’s wishes aside because they are feeling the burdens of guilt and shame for thinking about bringing in additional care, moving them, or having to make end-of-life decisions. This is why we urge you to have these conversations.
8. Help them to stay independent:
It is easy to focus on all that is being lost as someone progresses, but it is so important to focus on what they still can do. If they can dress themselves but cannot properly pick out their clothing, then lay their clothes out for them. Provide step-by-step visual cues if they no longer know where articles of clothing go. The more you include them and allow them to stay independent, the easier it will be for both of you during the interaction.
9. Focus on the wins:
Again, it is easy to focus on the losses being seen as your spouse progresses. However, there are still so many wins to celebrate too. Did they properly dress themselves today after not completing this task yesterday? Celebrate it! Did they help you cook dinner by mixing the ingredients for you as you guided them step-by-step? Thank them! By focusing on the wins, you are allowing yourself to let in the positivity of the dementia journey instead of letting in the negativity.
10: Know the benefits of moving versus staying home:
We frequently hear that the spousal caregiver wants to keep their partner home until they “no longer recognize me anymore,” “no longer know that this is our house,” “until they are ‘end’ stage,” and so on. However, this can do more harm than good for both of you. For you, this only increases the likelihood of negatively affecting your overall health, increasing your stress and depression, and making it much harder for you to be the spouse because you are the caregiver first. For your loved one, they are not getting the engagement that they would be getting in a memory care community. In memory care, we focus on engaging the person with dementia cognitively, physically, emotionally, and spiritually because it has been scientifically proven that increased engagement can slow down the progression of the disease. Additionally, when you move your spouse, it allows you to step back into the role of husband or wife, because we are now taking on the care and safety piece.
Making the decision to move your spouse is incredibly overwhelming. However, it is never too early to plan, and we cannot encourage this enough with some of these tips. Our goal at The Cordwainer is to make this as easy as possible for you and your spouse by guiding you every step of the way. Once you get past the very large hurdle of moving your loved one, you will begin to see that you have made the right decision. Far too often we hear the spouse and child of a person with dementia say that they wished they had moved their loved one sooner. Our goal is to minimize these situations by providing education, guidance, and a shoulder to lean on.
Shari Flight is The Cordwainer’s Director of Community Relations. She co-facilitates The Cordwainer memory care support groups each month. For move information about these type of issues or to tour The Cordwainer, please schedule a visit with our team.