Grieving a Spouse Who’s in Final Stages of Alzheimer’s Disease

Posted on by Emily Kil

One of the most significant challenges an aging married person can face is when his or her spouse enters the final stages of Alzheimer’s disease. Many professionals who work with family members of individuals diagnosed with Alzheimer’s have concluded that spouses face a grief process, particularly when a spouse enters into the final stages of the disease. This article addresses grief when a person’s spouse reaches the final stages of Alzheimer’s disease.

Stages of Alzheimer’s Disease

Before discussing grief when a spouse is in the final stages of Alzheimer’s disease, a review of those phases is necessary. The stages of Alzheimer’s disease are classified in different ways. There is one system in which the progression of Alzheimer’s is tracked through seven stages. There is another that focuses on three stages. 

For the purposes of a discussion of grief when a spouse is in the final stages of Alzheimer’s, the three-stage model of disease progression will be used. With that said, in order to lend perspective to the overall arch of the onset and progression of this disease, the seven-stage model is noted here:

  • Stage one – no dementia seen
  • Stage two – some memory loss (often considered age-related forgetfulness)
  • Stage three – mild cognitive impairment
  • Stage four – moderate cognitive impairment (usually considered mild dementia)
  • Stage five – moderately severe cognitive impairment (usually considered moderate dementia)
  • Stage six – severe cognitive decline (usually considered moderately severe dementia)
  • Stage seven – very severe cognitive decline (usually considered severe dementia)

For the purposes of this article, the three-stage progression model developed by the Alzheimer’s Association will be used:

  • Early-Stage Alzheimer’s
  • Middle-Stage Alzheimer’s
  • Late-Stage Alzheimer’s

As one further prelude to diving into a discussion of grief when a spouse enters into the later stages of Alzheimer’s, it is important to consider a concise overview of the disease manifestation found in each of the three stages of the Alzheimer’s Association progression model. The grief discussion presented in a moment has its focus on the experiences of an individual whose spouse is in the  middle or late stage of Alzheimer’s disease.

Early-Stage Alzheimer’s

During the early stage of Alzheimer’s disease, a spouse is very likely function independently. A spouse may tend to all activities of daily living, work, socialize, and so forth. The spouse at this stage may feel as if he or she is experiencing some memory lapses. Symptoms may not be particularly apparent at this stage, although people close to the spouse may notice some memory lapses as well. 

According to the Alzheimer’s Association, examples of memory lapses in the early stage of the disease include issues with:

  • Coming up with the right word
  • Coming up with the right name of a known person
  • Remembering names when introduced to new people
  • Having difficulty performing some tasks in work settings
  • Forgetting something that was just read
  • Losing or misplacing a valuable object
  • Experiencing increased trouble with organization or planning

Middle-Stage Alzheimer’s

It is at the point of middle-stage Alzheimer’s at which the spouse of an individual diagnosed with the disease is most likely to begin to experience grief. In most cases of Alzheimer’s disease, the middle stage is the longest and can last over the course of years. The Alzheimer’s Association succinctly explains the middle stage of the course of disease progression:

The person living with Alzheimer’s will require a greater level of care. During this stage, the person may confuse words, get frustrated or angry, and act in unexpected ways, such as refusing to bathe. Damage to nerve cells in the brain can also make it difficult for the person to express thoughts and perform routine tasks without assistance.

Symptoms of Alzheimer’s disease do vary from one person to another during the middle stage but typically include:

  • Forgetful of events or personal history
  • Feeling moody or withdrawn
  • Being unable to recall information about themselves like their address or telephone number
  • Experiencing confusion about where they are
  • Experiencing confusion about what day it is
  • Needing help to choose proper clothing for the season or the occasion
  • Having trouble controlling their bladder and bowels
  • Experiencing changes in sleep patterns
  • Showing an increased tendency to wander and become lost
  • Demonstrating personality and behavioral changes

Late-Stage Alzheimer’s

In the late and final stage of Alzheimer’s progression, the spouse with the disease will lose ability:

  • To respond to the environment
  • To carry on a conversation
  • To control physical movement (as the stage progresses)
  • To communicate (including about being in pain)

Once in the late and final stage of Alzheimer’s disease, the spouse will require extensive care. Palliative care and then hospice care can be of tremendous assistance to the person with disease as well as his or her spouse and the rest of the family.

Five Stages of Grief and the Spouse of a Person With Alzheimer’s Disease

  • Denial
  • Anger
  • Depression
  • Bargaining
  • Acceptance

Denial

When it comes to a situation in which a person faces the grieving process over a spouse with Alzheimer’s disease, the denial stage of grief can be particularly profound and challenging. This stems largely from the reality that in many cases involving Alzheimer’s, having a clear diagnosis of the disease may be a long time coming. In fact, many individuals who actually have Alzheimer’s are not given a final diagnosis of their condition until some point in the middle stage of the disease. 

Because of the amount of time that may have lapsed before a clear diagnosis of the disease is made, coupled with the sense of unreality associated with the mere idea of a spouse having dementia of any kind, coming to terms with the fact that a person’s spouse has Alzheimer’s itself can take a good amount of time.

The spouse of a person with Alzheimer’s is very apt to not only say but believe things like “the doctor got it wrong.” In many ways, that is a fair assessment. In many cases, the doctor may have had the diagnosis at least partially incorrect until the healthcare professional finally did make an authoritative determination that a spouse has Alzheimer’s disease.

In order to work through the denial stage of grief, a person whose spouse has been diagnosed with Alzheimer’s disease need to take a hard look at the state of health of his or her spouse with the disease. There are objective markers of dementia, including of Alzheimer’s disease. At this juncture in time, an individual in the latter stages of Alzheimer’s has symptoms and conditions that cannot be reversed. 

Because of the profound and oftentimes pervasive nature of the denial stage of grief experienced by a person whose spouse is diagnosed with Alzheimer’s disease, seeking professional support and assistance can be a wise decision. There are counselors and therapists that specialize in working with individuals experiencing grief. There are also counselors and therapists that focus their work on spouses and other family members of people diagnosed with Alzheimer’s disease. If a decision is made to obtain palliative care or even hospice care for a spouse with Alzheimer’s, both of these types of supportive services offer assistance to family members as well. 

Anger

Anger is a significant and necessary stage of grief, including (or perhaps particularly) when an individual has a spouse that ends up with a diagnosis of Alzheimer’s disease. Before discussing anger as part of the grief process when a person’s spouse is diagnosed with this form of dementia, a crucial point needs to be made:

The spouse of a person diagnosed with Alzheimer’s disease has the right to be angry.

In the aftermath of a person’s most significant other being diagnosed with Alzheimer’s disease, anger is neither inappropriate nor misplaced. What it is, however, is an emotion that must be worked through as is the case with the other four stages of grief stemming from a loved one being diagnosed with Alzheimer’s disease.

As is the case with denial discussed a moment ago, if a person finds that he or she cannot get beyond the anger associated with a spouse entering the later stages of Alzheimer’s disease, reaching out to a counselor of therapist can be an advisable course. There are also some other strategies that an individual approaching this stage of grief might want to consider employing or engaging as well:

  • Exercise and physical activity have been demonstrated useful in lessening a sense of anger when an individual is grieving. This need not be strenuous exercise and can be something as simple as regular brisk walks. 
  • Some people have also found relief or release from grief-associated anger through artistic efforts. Sketching, singing, writing creatively – really, any type of art has the potential for being helpful in lowering the level of anger when grieving.
  • Finally, many mental health professionals suggest that one of the benefits of journaling is the release of at least some pent-up anger, including anger derived from the grieving process.

Depression

Dealing with depression arising out of grieving the fact of and effects from a spouse in the later stages of Alzheimer’s disease can prove to be virtually if not actually overwhelming. Because an individual who has a spouse with latter stage Alzheimer’s disease, that person may not even initially recognize that he or she is experiencing depression.

Researchers have begun to realize that depression among older individuals (likely including the spouse of a person diagnosed with Alzheimer’s disease) tend experience physical symptoms arising from depression. According to the Mayo Clinic, the most commonplace of these physical symptoms associated with depression (including depression associated with facing the reality of a spouse with Alzheimer’s disease) are:

  • Headaches
  • Joint pain
  • Fatigue
  • Sleep disturbances
  • Loss of appetite
  • Gastrointestinal issues

Yet again, a note about the benefits of counseling or therapy is made if a person is challenged with significant depression that doesn’t seem to dissipate. When it comes to more profound depression associated with a spouse with an Alzheimer’s diagnosis who is in the latter stages of the disease, women seem to be at greater risk for potentially overwhelming depression. 

In addition to considering professional support and assistance to “take on” depression associated with grieving a spouse who has late-stage Alzheimer’s disease, there are some self-care strategies that a person needs to consider as well. Indeed, these self-care tactics are likely to aid in dealing with some of the other stages of grief as well. These recommended self-care strategies are:

  • Reach out and stay connected to others
  • Engage in activities that you enjoy, that make you feel good
  • Engage in physical activities
  • Eat a healthy and balanced diet
  • Get a daily dose of sunlight (whenever possible)
  • Challenge negative thinking (which applies to other stages of grief as well)

Bargaining

Bargaining is an expected stage of the grief process. Bargaining in regard to a spouse diagnosed with and in the latter stages of Alzheimer’s candidly can be said to be particularly futile. At the present time, there is no cure for Alzheimer’s disease. Some sort of spontaneous recovery just is not possible. By the time the disease progresses to later stages, Alzheimer’s will have destroyed significant portions of a patient’s brain. 

Denial and bargaining particularly go hand-in-hand during a grieving process associated with a spouse that is in the later stretch of the Alzheimer’s disease. The spouse of a person with Alzheimer’s is able to bargain because he or she denies the profound and irreversible (at least as of this time) nature of the disease. 

The bottom line is that bargaining is an attempt to make a deal with God, or the universe, or in some other manner about something that simply cannot be realistically resolved in this manner. Once the spouse of a person with Alzheimer’s recognizes that bargaining away the situation is not only improbably but impossible, movement towards a healthy resolution of the grief process is possible.

Acceptance

Ultimately, acceptance is the healing stage of the grief process. Acceptance occurs after anger, denial, depression, and bargaining have been worked through or addressed. Acceptance is the healthy resolution of the grief process of a person whose spouse is in the latter or final stages of Alzheimer’s disease. 

Reaching the level of acceptance in the grief process doesn’t mean that there will not be future days in which the spouse of an individual experiences such emotions as anger, sadness, or disbelief with the matter of a being a person with a spouse who has Alzheimer’s disease. Having said that, these are natural emotional responses at these future junctures and not potential impediments to a healthy resolution of the grief process.