Home: A Feeling More Than a Place (Or why your loved one with dementia always says the want to “go home”) By Mandy Shoemaker
If you have ever spent any time around someone living with dementia, it’s likely that you heard them mention that they are going home. Even if they are in the home they have lived in for the last 10 years, they may be in a constant state of packing to go home. This is because when someone with dementia talks about “home” it is more of a feeling than an actual place.
Those living with dementia often lose track of place and time. They may move in and out of their childhood, teenage years, and younger adult years. Although they may be surrounded by familiar faces, when they say they want to go home, they likely mean the home of their childhood or the home where they raised children. Imagine being disoriented most of the time, and not sure where you are or where you fit in. “Going home” feels like the safest thing you could possibly do.
At Prairie Elder Care, we don’t tell our residents the “are home.” We work to find something for them to do that is familiar and may give the same feeling of home, such as baking, singing songs, or playing a game. Giving people something to do that is purposeful also may give them a similar feeling. Everyone likes how it feels to be needed, or to accomplish something, so putting people to work may also give them that feeling of satisfaction and belonging that they are seeking.
If your loved one is in an Alzheimer’s or Memory Care facility and they keep telling you they want to go home, don’t assume it is because they aren’t getting good care. Instead, seek substitutes for that feeling of home that will make them feel better in the moment. One thing we know about Alzheimer’s and Dementia is that recent memories may fade quickly, but the feelings they invoke remain much longer and have a cumulative impact on overall quality of life.
Let’s talk about LOVE!!
People ask us a lot, how we do what we do. “Isn’t it depressing?” they ask. And although, there is certainly a sad side to what we do, we are so often heartened by love showing up in the sweetest places. Whether it is the love between spouses, parents and children, or grandparents and grandchildren…….it is there.
We have had the great fortune to know some amazing couples, and there is a very special place in our hearts for a spouse slowly losing their loved one to dementia. From the decision to move the spouse into a residential setting, to sometimes not being recognized, the grief for a spouse is difficult. For one of our couples, the husband has the most generous heart of anyone we’ve ever met, however he is not able to show it how he used to. But, for the last two years on his wedding anniversary, we have made sure that he had flowers to give his wife. The pride he feels in giving them to her and showing his true loving spirit goes a pretty long way in this sometimes challenging work.
When a parent realizes that their son or daughter has come to visit, there is always pure joy for an instant. Even if that mom or dad has a bone to pick…….the fact that their child has come to visit is a joyful one. During our Christmas open house for families, I spent time with one of our larger families who was there to visit. One of our resident’s sons sat with her for hours, and she just looked at him with amazing love in her eyes. In preparing to write this and looking at old pictures of this woman and her deceased husband, I realized that looking at her son at this age was like looking at her husband whom she must miss so completely.
You can imagine that we have a fair amount of great grandchildren who visit. These are often newborns, and our residents may have difficulty even connecting with their grown up grandchildren. But in the moment, when a great grandma holds a baby for the first time, with his or her parents and grandparents sitting there…… four generations of love is palpable.
Through many of the sad stories that we are a part of, the most amazing characteristic is love. If you have a family member with dementia, remember that love is not lost, it may be just beneath the surface. Keep your eyes open, because it may show up when you are least expecting it.
The Stigma of Dementia and Alzheimer’s
I have this inner conflict about dementia and Alzheimer’s. My ultimate wish is for a future when an Alzheimer’s diagnosis does not come as the same kind of devastating blow that it is today. It has made me think a lot about why Alzheimer’s is so devastating. It doesn’t cause physical pain, nor does it mean you only have a few months to live. But it does mean that you and your family will participate in the slow decline that leads to a long list of unpleasant experiences. The one that comes to mind now is dealing with the dignity issues that go along with incontinence. But, geesh, incontinence comes with a whole list of other physical conditions that we do not respond to in this way. See……thus begins my inner struggle.
My business partner and sister in law, Michala, and I were discussing this recently and I think she really got to the root of the issue. Dementia is often thought of as a mental illness, and our culture does not do well with mental illness and mental health issues. I also am a firm believer that how we handle mental health issues in our culture is one of our country’s most urgent crises. I’m the kind of person who wants to find a way to fix things, to make them right. How do I help make this stigma go away?
My inner struggle over this is the part that we can’t deny. This disease will strip the person who is afflicted very slowly of everything they have. Those of us who love them will have to watch. But, we can do everything possible to make every moment we have the best it can be. We just need to learn how.
I’ve decided, for now, that what I can do is educate people. Not educate them about the physical processes that happen in the brain as someone progresses through dementia or Alzheimer’s, but educate about the people who live with the disease and how we can make their lives better. I feel so strongly that we CAN make their lives better and it should be important to ALL of us because Alzheimer’s and/or dementia WILL touch all of our lives in one way or another.
One thing we are doing now is the KC Memory Café. Like us on facebook to learn more about memory café’s and how they are helping improve the lives of those living with dementia.
When someone is diagnosed with dementia it is typically the beginning of a series of losses for that person and their loved ones. One of the earliest and most significant losses is that of community. A person with dementia loses the place that they once held in the community for a number of reasons. They either choose to withdraw themselves, their loved ones force them to withdraw to protect them from the stigma of dementia, or their community no longer knows how to accept them. All of these reasons revolve around one central theme…..the stigma of Alzheimer’s. If given the choice, almost anyone would tell you they’d rather have their body fall apart and maintain a sound mind than to go through the reverse. So, when the devastating diagnosis comes, they retreat, hide, and essentially disappear from the community of which they were a part.
We are optimistic for a time when the devastation of this diagnosis is softened. A time when instead of retreating, families set wheels turning to lay the foundation for maintaining quality of life. That quality of life is improved by remaining a part of the community. The more we educate those around us what to expect, the more our communities will know how to handle us when we have dementia. The way to overcome a stigma like this is to educate. I’m not talking about educating people about Alzheimer’s Disease and what it is, etc. I am talking about educating people on what they need to do to be prepared for a time when dementia might impact their own family. An education focused on how to care for, and interact with someone with dementia. Without the stigma, family caregivers may be more apt to accept offers of help, be extended if our larger communities knew how to interact with someone who has dementia.
This dilemma is being addressed by some communities. For example, the Parks and Recreation department in Seattle, Washington has a program that organizes outings for people with dementia. In Europe, there is a great focus on creating dementia friendly communities and opening doors to people living with dementia. There are also programs for finding a new community of folks who may be going through some similar losses. We have started an Alzheimer’s Café in Kansas City called the KC Memory Café. Our first meeting is coming up on April 12. An Alzheimer’s Café is a facilitated gathering that brings together people living with dementia and their care partners. The mission of this movement is to create a new community where friendships can develop, we find new ways to have fun, and participants can connect with others experiencing similar loss. To learn more about the concept in general visit http://www.AlzheimersCafe.com and to follow what is happening here in Kansas City like our facebook page at http://www.KCMemoryCafe.com.
Written November 18, 2015
What a day! I wasn’t sure where to post all of my inspirations today, so I figured it might make a good blog! We were featured in the Kansas City Star today in an article written by the granddaughter of one of our residents who recently passed away. We knew the article was coming out soon, but had no idea it would be as perfect as it is. We couldn’t have asked for a better representation of what we do and why we do it. I am so filled by gratitude that I think I’m going to explode. I’m also filled with what I would call pride, but somehow that has a bad connotation to me. But really what I feel is proud that we have worked so hard together, solved problems big and small, supported each other and then worked some more. I’m proud that we take such good care of our residents and that their families trust us. I’m proud that we may be able to raise awareness about what we do and that more people will seek this type of care, not just in our homes, but in the others on our area.
But with all of these feelings, that is not even my main message here. My main message is to thank my brother, Jim Gibson, for marrying Michala Pifer. Michala and I have always gotten along well, and I never had any doubts about working with her. I didn’t expect what has happened. Yes, we work well together, but we continue to get even better at it. Not only is Michala my business partner and sister-in-law, she has also become my best friend.
She is an amazing nurse, who advocates tirelessly for our residents. Her knowledge of caring for the aging is second to none, and she shares that knowledge generously. Our strengths compliment each other, and where I am long winded, she is effectively short. Where I am a push-over, she is effectively strong. Her work with our families is wonderful, empowering them with important knowledge to make good decisions for their loved ones.
Michala is also a fantastic mother, wife, sister and daughter. Supporting her family with her strength as well as her sensitivity. Thanks, Jim. For bringing this force into our lives and for the opportunity to work with your lovely wife on this incredible journey.