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Living with Dementia: Reflecting and Hope

What do you hope for your loved one with dementia?

I talk to so many families of people with dementia. Often these conversations involve some reminiscing about a person’s life. These conversations often speak to the moment: How things are going right now? What do they see in their loved one? What do I see in their loved one?

Experiencing Dementia, Past and Present

Both talk of the past and talk of the moment is powerful. It illuminates the person’s life for both me and the family. Each person’s perspective offers something different. Families often focus more on the losses that come with dementia. I have not seen so much of those losses in their family member as they have. A family who sees their loved one with losses in mind may not as easily perceive present conditions in the way that I do. Each relationship offers a different perspective, and perception of a person against the backdrop of time.

Often these discussions include happy memories, but with sadness, discussions return to what once was. Loved ones will no longer be able to engage in activities or participate in the relationship in the same way. Maybe their loved one doesn’t even remember these treasured happenings or moments, or at least can’t communicate if they do.

Discussions about the present can be about mood, or something the loved one with dementia said or did that day. Sometimes the physical state is notable: maybe they had fallen recently, have a UTI, or have been losing weight. Maybe their loved one had a good day, or we had a powerful interaction, or a time of joy or profundity.

Dementia: Past, Present, and… Future?

What is often not thought about is the future. More specifically: What is a person’s hope for the future? So, I’ll ask: “What is your hope for your mom?” or “What is you hope for your husband?”

As you can imagine, the answers vary. Sometimes people consider this question for some time. Other times the responses flow out. It seems that some people are wanting to be asked about the future, but often they are not asked. Sometimes, people don’t think to ask these questions. Maybe, they don’t want to ask for fear of the answer.

Hopes for a Spouse with Dementia

A woman told me recently of her hope for her husband: “that he continues to be comfortable in his environment”. This man thinks he is in a memory care unit for a couple of days for some tests. This makes sense to him and is comfortable to him. He has had short stays like this in the past. Thinking he is doing ok and going home tomorrow keeps him feeling content. The cold hard truth would be awful for him to hear. He may not believe it, or think it a cruel prank. Or if he did believe it, his world, at least for that moment, would be filled with anguish. It is amazing how our minds can adapt.

This woman also says that she hopes that her husband believes he’s had a meaningful life.

When I visited him last, it seemed both hopes are still true for him – I told her this. He knows many of the ways that he found meaning and affected others. He is also comfortable in his surroundings and in his own skin, thinking he will be there for just another night and then going home.

This man is very friendly and has always been good at short conversations with any different people. He still is and has these conversations often where he lives.

The loss is still profound, but this woman has made some peace with her husband’s present.

What We Hope for Loved Ones with Dementia

With others, I have heard some similar things: hopes for continued peace and contentment are common honest answers. But sometimes, there is not peace and contentment in the present that can be continued. More than one person has said that the death of their loved one has been something they have hoped for. Sometimes this is a passing thought during a rough stretch. Sometimes it is a regular thought: “It would just be better if they died.”

At times, these hopes for death are something that I can comprehend, a desirable release. Some people have terribly troubling delusions and hallucinations that are awful and difficult to control. At times, these people can be nearly impossible to console.

When Hopes are Troubling

Many people with dementia will have rough times, thinking their parent is very sick, or thinking that someone took money from their wallet or room. This type of worry will usually pass and, while troubling in the moment, is not the same as the awful thoughts that can be experienced by persons with cognitive disorders such as Lewy Body Dementia. This is an important consideration.

Another consideration is that those who hope for the death of their loved one may be projecting their own misery onto the person with dementia: “I am miserable seeing my loved on this way, so they must be miserable.” I have witnessed this situation more than once. A person may say something like “I feel trapped because I need to visit my husband and no one else comes nearly often enough”, or “I resent coming so much and that no one else does, at least not enough,” or “it would just be better if they were dead.” These are troubling thoughts.

The biggest problem for those who experience these thoughts and feelings is that they generally don’t know they feel that way. People who can express those types of feelings recognize them. By recognizing feelings and talking about them, those feelings can be lessened. Then a person can be helped to see the loved one with dementia for who they are, and not just who they were. This recognition, and the subsequent support, can enable a loved one or caregiver to take time away, ask for help, or at least unburden themselves by talking about their feelings and troubles.

Not recognizing this pain can cause misery to grow. The resentment toward others for not visiting, and the unrecognized resentment towards their loved one, can fester. People can become bitter. A person may say “my loved one is miserable, but I am doing fine,” when just the opposite is the case: the person without dementia is miserable and the person with dementia is doing just fine. The person with dementia might even be happy as a clam, without a worry in the world.

Varied Perspectives, Trustworthy Views

Coming full circle, there is value in the varied perspectives around a person with dementia. Trust what others are seeing. If people who do not have your history and do not have your same emotional attachment say that your loved one with dementia is doing well, then they probably are. Know that you may not be able to see it because of your own pain, or maybe you don’t see it because your loved one acts differently when you’re not around.

The woman I talked about earlier knows that this is the case with her husband: Sometimes when she sees him, he thinks she is there to pick him up, and then when he doesn’t leave with her, he is upset. He acts differently when she is around, and she knows that. But she loves him and visits him anyway, even while knowing that it may not go well for at least part of her time visiting.

Loving someone with dementia may not be easy. That is the hard part about love: With great love there can also be great pain. If there was no love, there would be no pain… and we wouldn’t give up the love just to avoid the pain.

Reverend Arlen Solem

Chaplain and Campus Pastor

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 612-554-6379 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.