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 there can be many unanswered (and unasked) questions. Some of 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
Signs of Advanced Stage Alzheimers
Individuals do not progress in 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 without help.
- Eating: Along with being unable to feed themselves, they may have trouble 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 the 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 be unable 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 bodyweight 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.
Some 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 the point of needing 24-hour care, it also brings 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."
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.
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,
Frequently a person enters the final stages of dementia after a traumatic event. That could be a move to a new location, a fall that requires hospitalization, or an illness. For my father-in-law, Michael, it was a series of falls and a urinary infection that left him hospitalized for several days.
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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 decide 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 ones. 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 End Stage
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 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.
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, 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 a 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.
Teepa Snow Advice on Challenging Behaviors
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Questions & Answers
Question: How do you know the onset of death is near?
Answer: Generally, when death near, the person will be sleeping a lot, they may stop eating and drinking (because their internal organs are shutting down) and they may not be responsive to their caregivers. Frequently, they will be bedridden and incontinent. Often, they may have stopped speaking for some time. However, my father-in-law woke up and told his caregiver a joke just moments before he passed away. Sometimes, right before the end, the person will rally some strength for seeing relatives one last time, and may seem to be getting better. That is why it is really helpful to get help from Hospice services to help you prepare for and understand the end stages of your loved one's life.
As soon as you sense your loved one with Alzheimer's is in an advanced stage, I suggest that you contact hospice services. Hospice services vary from city to city but they are generally free, or covered by insurance. The goal of hospice services is to help individuals and families to prepare for the end of life. Because Alzheimer's affects each person's brain differently, it can be hard to know when your relative is nearing the end but a person who has had a great deal of experience and training can see the signs and will not only help you to be prepared, but, even more importantly, be able to make sure your loved one gets every possible help to make this process peaceful, comfortable and painless. Hospice services generally can call a doctor at any time and get a quick response and access to pain medicine or other things that might be needed. Additionally, they can provide people to relieve relatives to sleep or rest.
Question: How do I handle my mother screaming to call the gas company because she thinks poison is coming through the furnace?
Answer: There is not just one good way to deal with an Alzheimer's patient's delusions. Because these things seem real to the person and because they have lost their ability to reason logically, it usually doesn't work to try to explain it isn't true. Here are some things that you can try:
1. Divert her attention to something else.
2. Try to get them to go outside and do something else like go for a walk, "Why don't we go outside (or get in the car for a drive) while I make that phone call."
3. Make a "fake call" to the gas company (pretend to call or get a trusted friend who will take calls from you and pretend to talk to your mother). If you have a trusted friend, who will talk with your mother and listen to her and then say "I'll take care of that right away" that might resolve the problem.
Question: Will hospice give me advice if he is in the last stages of Alzheimer's?
Answer: Hospice will tell you when your loved one is very near death, but I don't know if they will tell you if your loved one is in the last stage of Alzheimer's (which can last for a while). However, if you are using Hospice, they will help guide you during this time and help you know if any changes you see are something that is expected as the person declines, or if it is something you should investigate to see if there is something you can do to help the person. Your doctor will be the best person to access which stage of Alzheimer's your relative is in, but you may need to specifically ask them. Some doctors don't want to share information that they think will be sad for a patient's caregivers. Additionally, no doctor can tell how long any stage will last in a particular person, but they can give you the general guidelines for most people.
Question: I have the advanced or middle stage, hiding it well for now at age of 53. How long do I have? It seems a slow steady progression with periods of not knowing anything or anyone.
Answer: If you are 53 you may not have Alzheimer's. Your memory loss might be caused by some other medical condition and I would urge you to see a doctor and tell them the truth. While some people do get early age Alzheimer's, you probably wouldn't be able to write a note on a computer if you were in the middle or late stages. Many people who have memory problems can be helped and I hope you will go to your doctor and see if they can find out what is causing this.
Question: My mother has Alzheimer's that is severe. At age 93 she keeps eyes closed 24/7, can't speak, and can't walk. She is also difficult to rouse. Is she near death?
Answer: I offer you my greatest empathy. I'm sure that caring for your mother right now is very difficult. Each Alzheimer's patient is different. My father-in-law joked with a nurse just five minutes before he passed away peacefully. Your description of your mother suggests that she is in Advanced Alzheimer's. Your best source of help for knowing exactly when her passing is near is healthcare workers that know her. I hope you have contacted hospice. They will guide you. Of course, you also should be talking to her doctor.
Question: Both of my parents are presently in a nursing home with Alzheimer's. My Dad recently had a pretty bad UTI and has gone through some dramatic changes. His weight has dropped to 134 pounds; he sleeps most of the time. We can barely get him to talk to us anymore. I am very concerned and have asked the facility to have hospice come and evaluate him. What are your thoughts?
Answer: I am glad that you are having your father evaluated by hospice. It seems to me that his symptoms are similar to someone with advanced Alzheimer's and hospice will be able to give you help and encouragement as you guide him through this time in his life. Blessings on you! You are in a difficult life journey, but you will be very glad that you have done this for your parents.
Question: My husband with Alzheimer's doesn't want to get out of bed, does this mean the end?
Answer: If his refusal to get out of bed is a new symptom, I think it would be a good idea to have him evaluated by a medical professional. They may be able to help. If you have not yet called in hospice to help you, that might be an excellent idea. The hospice nurses know all about the symptoms of advanced Alzheimer's, dementia and other diseases and they can tell you exactly what to expect. My thoughts and prayers will be with you as you face this difficult situation.
Question: Just wanted to thank you for your explanations and suggestions. Your words have helped me to cope and care so much more! Will I survive this awful disease Alzheimer's?
Answer: I offer you my very sincere empathy for all you are dealing with as your loved one faces the final stage of Alzheimer's. You will survive and be glad afterward for all that you were able to do and give to your loved one. Be sure to look at my other articles on this topic for more help. I'd especially suggest my article about surviving caregiving: https://healdove.com/older-adults/Care-for-a-Loved...
Question: My mom has stopped eating and drinking. She is sleeping a lot and seems to be in a lot of pain. She was just released from the hospital for a UTI but seems to be getting worse. Is this a sign of the end stage?
Answer: I would strongly suggest that you call to talk to her physician or discuss this with hospice. If she is diagnosed as terminally ill and you are not using hospice services, I'd strongly suggest you call to arrange them. I think the most important thing is to try to manage a person's pain. Many illnesses can cause someone to stop eating or feel in pain, but if this is not how she was before going to the hospital it is important to find out what is causing the change. My prayers for you as you travel this difficult caregiving road.
Question: Caregiving is extremely difficult because my dad has almost made it impossible for us to do what we need to do for my mom. Yet he feels he controls everything by calling us to and three times a day to let us know that she won’t eat, and she won’t drink. How can a family handle a situation when the spouse won't give up control over the person with Alzheimer's?
Answer: The situation you describe is very common and, in fact, was something we also encountered. According to the books I've read on Alzheimer's, a crisis of some sort, such as a fall, an illness, an accident or some other emergency often is the segway into putting a person in a nursing home. Of course, a crisis is exactly what you want to avoid. However, being conscious of that can help you to be prepared. I would suggest that the first thing a concerned family needs to do is to investigate the different facility options and costs, including looking at reviews, talking to doctors and friends, and visiting the facilities. Next, they can enlist the help of the patient's doctor to help. Thirdly, you can consider facilities that might allow both spouses to live in the same place, receiving "continuing care" from independent living, assisted living to nursing home care. Sometimes that can be a good solution. A couple can move into an independent living space and then as needed, one or both spouses can receive more care. After the extended family has done research, you can approach the more able spouse (with perhaps the help of a doctor or other geriatric professionals) to suggest the move.
Question: Do Alzheimer's patients have nose bleeds in the later stages?
Answer: I have not read that nose bleeds is a symptom of the later stages but I would imagine that all of the changes in the body during the disease could possibly lead to that. However, I don't know of that as being a sign of the later stage.
Virginia Kearney (author) from United States on June 07, 2018:
Dear Jen, you have my complete sympathy and prayers as you deal with all of these feelings and sense of helplessness. While I cannot offer any specific answers to your grandmother's situation, I will offer what I do know and some suggestions. On average, Alzheimer's patients pass away about 8 years after diagnosis, so your grandmother's advanced stage is normal for people who have had the disease this long. Hospice should have some information they can give you about the last stages of the disease. We were given a pamphlet which explained the stages people go through in their last days. I think you should ask to see if they have any information they can give to you. The main thing that I learned from that information which was helpful to me is that as a person is dying, the systems in their body start shutting down. This made sense to me that the body does not just suddenly stop all at once, but the different organ systems start failing gradually. In my mother-in-law's case, that meant she stopped eating. The hospice nurse told me that could be because her digestive system could not process food very well, so she ate very little. Of course, you want to be sure there is not some other reason for this, but when all other medical reasons are ruled out and a person is in the last stages of Alzheimer's it can be normal for them not to eat or drink much (as your grandmother is doing). You would need to check with the hospice workers, but it actually might be painful for her to eat more than she is doing now. I do not know for sure, but I would assume that the variation in her blood pressure readings could be for a similar reason. It is also very normal for a person at this stage to be "totally dependent on others." I would suggest that you might want to schedule a time to talk with the hospice people who are caring for her in order to get their perspective. I also think it might be helpful for you to schedule some specific time to visit and tell your grandmother everything you want to tell her before she passes away. Even if she cannot respond, she may very well hear you and you will have the peace of knowing you have spoken to her. Additionally, there is a wonderful book by a former hospice worker that I would recommend. My aunt gave it to my mother and I read it when my mother got cancer. I happened to see it last week at Barnes and Noble. It is by Trudy Harris and is called "Glimpses of Heaven: True Stories of Hope and Peace at the End of Life's Journey." Finally, I hope you will read my other articles on this topic including the one about Caregivers and steps to preventing Alzheimer's.