A Middle Stage of Dementia Can Bring Frustration

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At a point in memory loss, abilities and desires may not match up, leaving those with dementia and their loved ones frustrated

Over the years, I’ve worked with many people with dementia who long for what they had. They think they want what they really don’t or can’t have anymore. I think of a woman who has passed away now. She was an active part of her church in many ways for many years. She led Bible studies, and was a part of other service groups. She used her writing and office skills volunteering in her retirement. She also attended worship religiously.

Not realizing the effects of limitations

When this woman was in memory care with us she still had the drive to attend worship regularly. We had worship at her house, and she gladly attended that. But Sunday morning would roll around and she craved going to her church. Her son would take her once a month. He was not able to take her more often. On the days she would go, things didn’t go well. This woman was hard of hearing and would talk very loudly during the service not knowing she could be heard by all. She would think she would need to use the bathroom and would loudly say this and either wheel herself out or need someone to wheel her out all the while taking a long time to get out of the sanctuary and being loud the whole time. She had no idea that she was causing any disruption, or that it was difficult for her family who had brought her. Using the bathroom, she needed help which wasn’t easy to provide, and she would miss most of the service as a result.

Irritations and challenges for all involved

She would complain to her other children who lived in other places about how she didn’t get to church as much as she would like. Luckily for her local son, the children were all in good communication and knew what was going on so didn’t blame their brother for anything. This woman would call her friends and ask them to pick her up. In her mind, it was simple. It was just a ride. She didn’t realize the difficulty while at church nor did she realize how much help she needed to get in and out of any vehicle. Her son would have to talk to her friends and tell them not to pick her up. Her friends were all older too and wouldn’t have been able to assist her getting in and out of their vehicles anyway. But she didn’t realize this.

It was hard to say no to her. Instead of being grateful to her son she was upset with him. The one helping her the most was the enemy and not her helper. She wouldn’t accept any reasoning, or if she did it was quickly forgotten. Sunday mornings were really hard for her for quite a while. It was really COVID that quieted this issue when there was no in-person worship to miss. By the time there was in-person worship again she had declined enough and was out of the habit enough that it was no longer an issue for her.

Wanting more, but lacking capabilities

I have known other people, who remember what they did in their lives and think they want more. They can sometimes be unhappy thinking about what they are missing out on. But when there are opportunities to do more they turn them down. Their dementia is bad enough that it prevents them from acting on opportunities to go out more. Their mind gets too tired and too overwhelmed to do many things.

Sometimes though when there are moments to think, they think they would like to do more. So they think they want something they really don’t want. One man says he has nothing to do. He was offered day programming but his dementia has him so groggy in the mornings that he doesn’t want to go and probably couldn’t go most days. He will still say he wants to go out more but always declines when the opportunity is there. He knows that people his age often do so much, and he had been someone who engaged in many activities prior to dementia. At times, he thinks he wants what he doesn’t really want. It can often leave him feeling dissatisfied.

Loved ones can feel unfulfilled and limited too

When you love someone with dementia this is sad to see. You want for them too. You wish they would accept their limitations but their dementia often prevents them from seeing these limitations clearly. If they could think more clearly they would either be able to do more or they would recognize their limitations.

The sad truth is that for many of these people what makes them most satisfied is that their dementia increases and they no longer have these desires. It’s the middle ground when the desire doesn’t match the ability when things are most difficult.

Advancing dementia may bring different perspectives

The woman I wrote about who wanted to go to church every Sunday would become much happier in her life as she declined more. She would talk about her life and family with gratefulness and reflection. I remember her telling me that she’s had a good life. Her son who she had been so angry with could visit and she would no longer complain about not having her checkbook or how he wouldn’t take her to church. Her family would give her candy which she appreciated, and her family was happy if I helped her share with her housemates. She would good-naturedly tease me about how I was so generous with her candy. I love her and miss her.

Reverend Arlen Solem

Chaplain and Campus Pastor

In gratitude, thank you so much to all of our volunteers and donors who make all of the work we do at Cassia possible. Your contributions are greatly appreciated and needed to ensure we are able to fulfill our mission.

For questions about our spiritual care program, or if you would like spiritual care and support for you or your loved one, contact Chaplain Arlen Solem at 612-263-0503. or Arlen.Solem@cassialife.org.

At Emerald Crest, we offer a deep knowledge of memory care in a specialized assisted living setting for seniors with Alzheimer’s and dementia-related conditions. We encourage you to contact us directly with any questions or request a tour. For tours and general information, please contact Elizabeth Wendel at 952-908-2215.

Emerald Crest by Cassia provides memory care in a unique environment, specifically designed to support those with cognitive issues. Utilizing this exceptional model of care, individuals with dementia, Alzheimer’s and related conditions can flourish in positive relationships and participation in meaningful activities. Memory care is offered in the Minneapolis – Saint Paul area with communities in four convenient locations: Shakopee, Burnsville, Minnetonka and Victoria, MN.