Caring for Someone with Dementia

February 14, 2019

The Love of Family Caregivers: Strength, Devotion and Unique Perspectives 

Chaplain Arlen Solem

I am often amazed by the families who cared for our residents at home prior to moving in. Many times, I have met residents who just moved in, and I’ve seen firsthand the amount of care they need. I then meet the family, and learn that often one person, maybe but not always a spouse, has been caregiving largely alone or possibly with help from other family and paid caregivers.

Family Caregiving Situations with Memory Loss

I’ve met an elderly woman who has been caring for her husband at home. This husband needed assistance with almost everything – eating, bathing, using the bathroom, getting dressed, even standing. It is hard to imagine myself performing these tasks and the physical toll it would take on me – I’m a 41-year-old 6’2” 240lbs man and not a 5’4” 130lbs 87-year-old woman – but people do it.

Also, I’ve met a woman who is physically in quite good shape, but she has severe dementia. Her husband could barely sleep for fear of his wife wandering outside in the middle of the night – she could get lost – and he has also feared for her safety when she’s endeavored to use basic household tools.

I have even known of spouses who have not recognized their husbands or wives, and threatened them, thinking that they were an intruder in the home.

Fear, Sadness and Struggles for Family Caregivers

I began this writing by saying I am amazed, which is true, but I am also scared and saddened by much of the conditions and situations managed by so many caregivers of those with dementia. Scared in that caregivers themselves, let alone those with dementia, risk the possibility of getting hurt quite badly. Saddened in that it must be so emotionally taxing to have the physical and emotional toll of having little sleep, or a spouse who cannot thank or even recognize a loved one. Especially so, considering that this person might even verbally or physically attack a person that they have loved for most of their life.

I know that in most of these situations, things don’t become this drastic overnight. It starts with a person just needing some help in remembering things. But situations develop over time, and the change is often so gradual as to be unrecognized. Eventually, though, caregivers may have little or no life beyond caring for their loved one. Physical and emotional isolation can ensue, due to the need for hyper-vigilance and care for basic safety needs. Seemingly minor situations, such as having to explain someone’s behavior, can be emotionally draining.

When Caregiving Becomes Overwhelming

For family caring for someone with dementia, care needs can become all consuming. This can be true either directly, by caring for the individual with memory loss, or indirectly by arranging outside care, or a combination of these. People can become like managers of a care facility, due to the time requirements and the high level of responsibility. These stressors become apparent in obvious ways when the work is professional: paid caregivers get sick, take time off, or quit; however, taking a break may not be a clear possibility for a family caregiver.

Often, families who provide round-the-clock care will struggle to ask for help. They feel this is their cross to bear. Daily life becomes so overwhelming that there is no time to consider a needed change, such as moving the person to a memory care facility. When a need for change is realized, I’ve known people to describe this as a feeling like failure.

A Fresh, Significant Perspective – Family and Friends

Often it seems that outside people, who have a perspective apart from the primary caregiver, can have important insight. These individuals are close enough, friends or other family, and can see the situation for what it is. Those who love both the caregiver and the person with dementia, have the unique perspectives and relationship to truly help. This is essential when the primary caregiver is overwhelmed with direct care needs, or with blind devotion to the loved one with memory loss.

It seems that quite often there is an event, such as the person with dementia needing to be hospitalized for pneumonia or the caregiver falling on ice and breaking a leg while caregiving. Such an event either forces a change or provides time and resources – here, the caregiver can see that change is both needed and possible. With time to examine the situation, sometimes caregivers get the perspective they lacked while busy performing the care duties. At this point, family and friends can speak with the caregiver in a way that they either couldn’t or wouldn’t before.

The Love and Devotion of Caregivers

I applaud the devotion and love that so many people show as caregivers, even if I also sometimes wonder whether the devotion is not misguided.

One thing I often hear is that, if the person with dementia could have foreseen the future and known the care that would be needed, they would not want such a struggle for their family caregivers. They would tell their loved one to not live that life, in favor of a more balanced situation. Thankfully, family and friends show devotion as well. Many good outcomes are the result of these supportive, loving relationships.

Are you somewhere in these stories? Is someone you know in them? Were you one of these caregivers? I would guess that most of us, if we look at our lives in the present and past, would find that we either are or know someone in these situations.

Blessings to you on your lives and in the lives of your friends and family as you journey with God in the joys and struggles of life.

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 apsolem@augustanacare.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 Christine Drasher at 952-908-2215.

Emerald Crest by Augustana Care 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: ShakopeeBurnsvilleMinnetonka and Victoria, MN.

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My husband has been at Emerald Crest for about two years. It is a bright, clean and attractive place to live. The caregivers have been considerate, attentive, and caring. My husband has always said it was a nice and pretty place. I always enjoy going up and visiting when they are having activities.

— Anita, wife of resident

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