Symptoms of Advanced Alzheimer's
The Unanswered Questions
I was a caregiver to two relatives with Alzheimer's. As a caregiver to a loved one with this disease, I know that there can be a lot of unanswered (and unasked) questions. Some the questions you may have as a caregiver include:
- What does the future hold?
- What are the signs that the end is near?
- How much time is left?
Although I cannot definitively answer these questions for you, I can shed some light on what to expect, based on my own experience and research. In this article, I will cover:
- 10 signs of end-stage Alzheimer's
- Recognizing advanced Alzheimer's
- Preparing for the end
- Caregiver help
10 Signs of Advanced Stage
Individuals do not progress in exactly the same way, but in general, the person in the final stages of dementia will be moving towards needing a full-time caregiver to do all of their daily personal care. Occasionally, a person in the late stage will rally, like when my mother-in-law suddenly called my son by name. However, in considering the overall condition of the person in late stages, there is a downward progression:
- Personal Care: inability to do daily living tasks at all. Can't take a bath, brush hair or dress self without help.
- Eating: Along with not being able to feed themselves, they may have trouble with chewing and swallowing. They may not want to eat, and caregivers may be asked to consider a feeding tube.
- Speaking: Frequently there will be a severe decline in the ability to speak. Perhaps the person will speak a few words or sounds, or not produce recognizable speech at all.
- Naming: Often loses ability to know even familiar people or to recognize anyone by name.
- Mental State: A decline in mental functioning means that many of the most difficult psychological problems like hallucinations, paranoia, and aggressiveness will decline or disappear.
- Incontinence: In late stages, Alzheimer's individuals generally lose control of their urinary functioning. Soon afterward they will also be unable to control their bowels.
- Movement: Although some people remain ambulatory, most will have gait disorder and frequently in the late stages they will be wheelchair or bed bound.
- Wandering and Restlessness: Any tendency to wander will be increased and the person may now lose their way even in their own house. They may not be able to find the way back from the bathroom to their bed.
- Weight Loss: Partly due to the inability to eat as well as process food, they may have their body weight decline, perhaps to even below 100 pounds. They may even be in the 70-80 pound range near death.
- Infections and Seizures: The decline in the brain and immune system leaves the person very vulnerable to other disorders and infections, particularly pneumonia because they often cannot clear out fluids from their lungs and inhale food.
Certain Things Get Easier
While physical demands increase, emotional demands can get easier during this final stage. In fact, if you have dealt with the care of a person who has been combative or difficult, as I did with both of my in-laws, it might be helpful to know that while Advanced Alzheimer's brings most people to a point of needing 24-hour care, it also brings a relief from some of the most troubling aspects of the intermediate stage: delusions, paranoia, aggression, and hallucinations.
Having taken care of both of my husband's parents in their journey through Alzheimer's, I have great empathy for other caregivers. The most helpful advice I got at this stage was from our family doctor, who had walked his own father through this disease. He told me, "Things actually get easier once people with dementia deteriorate past understanding what they have lost."
Recognizing Advanced Alzheimer's
Less Emotional Turmoil
One of the most obvious signs that your loved one is moving into a later stage of the disease is that you may find them easier to manage. The intermediate stage of Alzheimer's is the most difficult. In the middle stages of the disease, many individuals have delusions, aggressive behavior, and anger towards the caregivers. However, when mental ability fails, these stressful behaviors diminish or even go away completely.
We saw this dramatically in my father-in-law, Michael. In the intermediate stage, he was verbally abusive, aggressive and paranoid. For his safety and ours we had to move him to a nursing home and for a while, we couldn't even visit him often. Much to our surprise, when Michael entered Advanced Alzheimer's, he completely changed. This man who had been tense, angry and frequently difficult even before his disease became docile, happy, and very cheerful. The nurses loved him and other visitors told us they knew he must have been a very kind man. To tell the truth, he had not. Yet we were so grateful for this period of time when we could have pleasant visits and good memories.
Frequently a person enters the final stages of dementia after a traumatic event. That could be a move to a new location, a fall which requires hospitalization, or an illness. For my father-in-law, Michael, it was a series of falls and a urinary infection which left him hospitalized for several days.
Before this event, he was walking, and though often aggressive, was able to carry on short conversations about real events and memories. After his hospital stay, Michael never left his bed. Though able to continue eating regular food, he became vaguer in conversation, frequently repeating platitudes rather than actually interacting with what we said.
More Personal Care Needs
Largely as a result of increasing needs for personal care as well as more frequent medical problems, families at this stage often start thinking about moving their relative into professional care at a nursing home or other facility. However, unless the person is hospitalized, it often takes some time to find a bed for a patient.
One of my purposes in writing this article is to help families to see the advanced stages early enough to gain the benefit of hospice and nursing home care that can reduce the great strain on caregivers during this last stage. Unfortunately, families often take too long to make the decision on the move. In my own family, three of my relatives were placed in nursing care in the last month of their lives. Faithful caregivers had broken down their own health in trying to take care of their loved one. By early recognition of the advanced stage of Alzheimer's, full-time help, whether in-home or at a care facility, can make sure the caregiver does not hurt their own health.
Often dementia in an Alzheimer's patient seems to plateau for a while. One sign of the ending stages is a decline in the person's abilities. They may stop being able to go to the bathroom, or chew without being reminded, or won't want to get out of bed. Frequently, this signals the beginning of a more rapid decline in abilities and functioning.
Unlike Michael, my mother-in-law, Nicole, seemed to slip into the later stages more gradually. After her husband's death, she would call me daily to ask about him for about 4 months. Every day I had to tell her again that he had passed away, and again go through her grief about it. Then, much to my relief, she stopped calling me daily. Soon afterward, she started having more falls and eventually stopped walking, talking and eating.
Preparing for the End
It is important to understand that each person's dementia expresses differently. Before dealing with my in-laws, I had a picture in my mind of what a person with advanced Alzheimer's was like through my visits to the nursing home to carol at Christmas. I pictured someone sitting in a wheelchair staring vacantly ahead. Therefore, when my very intelligent and well-educated in-laws continued to be able to converse intelligently with us even though they were unable to remember things or do personal care, I assumed they were still in the earlier stage of Alzheimer's. As a matter of fact, my father-in-law was able to make a joke with the hospice nurse just a couple of minutes before he passed away.
Therefore, it is very important to communicate with doctors, nurses and hospice about the stage they feel your loved one is in so that you can make care decisions.
As you near the end, it may be important to have a "no resuscitation" order prepared at the nursing care facility or with the hospital. It is also important to talk with the whole family about what you will and will not do to prolong life. Frequently, a person with deepening dementia will stop eating and drinking. Giving them a feeding tube can prolong their life, but can also create medical problems if their body systems are shutting down. Moreover, some measures to prolong life may be painful.
To our dismay, the paperwork for my mother-in-law had not been changed as she entered late-stage Alzheimer's, and as a result, we were faced with some agonizing decisions and her last days of life were prolonged in great misery. Very dehydrated, she was rushed to the hospital. We were informed she would pass away in that night. Instead, because they re-hydrated her at the hospital, she got better and they urged us to give her a feeding tube. We agonized over this decision, feeling pressured by one of the doctors to insert the tube, even though we knew Nicole would not have wanted it.
Finally, we were blessed by a long talk with the Nurse Practitioner who had been regularly seeing Nicole, along with the advice of my cousin, who has worked for years in hospice. Both of these women left the decision to us but gave us the freedom to follow our gut instinct to do what we felt was right for Nicole, and what she would have chosen if she could. We did not give her the feeding tube but instead enrolled her in hospice.
Get Hospice Care Early: Hospice care is palliative care meant to ease the dying process. Hospice nurses and volunteers are available to help both the patient and the caregivers with practical, emotional and spiritual support. Best of all, Medicare generally pays for hospice care whether it is given to a person at home or in a care facility. Generally, hospice care is available for much longer than people take advantage of it. Speak to the doctor to see if your loved one would qualify to get hospice services.
Hospice Care Focuses on Comfort: The hospice nurses helped us to encourage Nicole to eat and drink, but also gave us permission to allow Nicole to refuse food and water as her body could not process it. It is natural in the process of dying for a person to refuse food and water. As the digestive process begins to shut down, the body cannot process nourishment and it makes the person uncomfortable. By making the decision to have an Alzheimer's individual moved to hospice, you allow the care for that person to move towards making them as comfortable as possible as they travel towards death.
lost in house
make picture signs, color guides, baby monitors to listen, warning bells on outside doors
can't dress self
use velcro fasteners and loose clothes
doesn't like bathing
give towel bath, or break bath into parts, use soft towels
seat them upright, move slowly, puree food or use finger foods, stroke neck to aide swallowing
use routines like music and massage, bedtimes snack,keep awake during day,
5 Ways to Prepare for the End of Caregiving
- Understand the End of Caregiving is Difficult: After the traumatic relationship I'd had with caregiving my in-laws, I really expected to mostly just feel relieved after their death. In fact, I was stunned at the depth of my emotions and grieving. I did not grieve that they were gone because I knew they had been more than ready to go. However, I grieved deeply for many of the aspects of their lives and our relationship that I wished had gone differently. Moreover, both my husband and I spent many hours just thinking through my in-law's lives and going through their papers and re-evaluating our own thoughts and feelings about our relationship.
- Make Funeral Preparations: Going through photos, videos and favorite songs can be a good way of preparing emotionally for the end of your loved one's life. Hospice workers are very helpful in guiding you to know when the end is near. Preparing for the funeral before death can help you make these arrangements together with other family members and can also help you make clearer decisions.
- Make Plans for the Future: Caregiving is physically exhausting and emotionally consuming. In the last few months of your loved one's life, the caregiving may be all you can think about. I was rather upset when my husband proposed that we begin thinking about some home renovations we had been putting off during the five years of caring for his parents. Yet, when we started that process soon after his mother's death, I began to see the wisdom of having a plan for my days which kept me busy. Having something to do was an important part of my own healing from the stress of caregiving.
- Make Time for Grieving: Whether your relationship with the person with dementia has been loving or difficult, prepare for an extended time of grieving. Give yourself time and space to think about things peacefully. I was very grateful that our home renovation project gave me many hours to think and reflect while painting, plastering or cleaning.
- Find Someone to Talk with: While you will need time to grieve alone and think, it is also important not to be too isolated. Talking out your feelings to a sympathetic ear can be a great relief. Sometimes it helps to join a group of other caregivers or to get professional help from hospice volunteers, a pastor or counselor. However, you may just find the best help is a group of friends who may not know about caregiving but are willing to love you and listen. For me, it was a wonderful group of young moms that I met in a Mothers of Preschoolers and Toddlers group at church. They listened, encouraged, and loved me through all of the emotions of this end of Alzheimer's caregiving journey.
As Teepa Snow discusses in her excellent video, "Letting Go," the caregiver needs to help the person they love to end their journey by being willing to say goodbye. Giving the person permission to let go and leave can be difficult, and heartbreaking. Yet, it can also lead to personal peace as you allow the person to choose to end their suffering.