Alzheimer’s & Hospice: What to Expect Towards End of Life

The cause of death in people with Alzheimer’s disease varies from person to person, but we can still discern that there is a basic pattern to the process. Alzheimer patients will slowly lose their ability to control essential body functions, such as eating, drinking, and toileting. At some point, their bodies shut down.

Eventually, Alzheimer’s patients’ will not be able to move much on their own. They will lose their will to eat or drink, causing them to lose weight and become seriously dehydrated. It can become challenging for them to cough up fluid from their lungs, leading many people with Alzheimer’s to develop pneumonia.

Other common signs that a patient with Alzheimer’s disease is close to their end-of-life process may include:

  • -Speech becomes very infrequent if anything at all is even spoken.
  • -Inability to do elementary activities such as eating, moving from one location to the next, or even change their position in bed or in a chair.
  • -Struggling to swallow.
  • -Developing sores due to their immobility as sitting or lying down in the same position for too long can become extremely uncomfortable.  This leads to bedsores or pressure ulcers, as they are commonly called.

Eating & Drinking Issues with Alzheimer’s

It’s prevalent for people with late-stage Alzheimer’s disease to lose their appetite.  You may think about using a feeding tube, but these tend to be extremely uncomfortable and tedious to maintain. More times than not, this leads to physical discomfort and complications and rarely lead to an extended period of life with those living with Dementia and Alzheimer’s.

This is why the owner of Nevada Hospice Care has taken the time to find alternative routes to helping those with Alzheimer’s and Cancer patients eat.  We call it “The Miracle Berry.” The miracle berry is just one of the fantastic alternative therapies that help our Alzheimer’s patients. This sweet little red berry puts the enjoyment back into eating by turning sour or unpleasant foods into sweet and delectable foods for those who just can’t muster up their appetites.

If you decide to use a feeding tube, be aware that there are risks like developing diarrhea, occlusions/blockages in the line, painful skin irritation, and tubes needing to be replaced because they were accidentally pulled out by the patient.

As Alzheimer’s progresses, your loved ones may struggle with eating by themselves.  The further the progression, it’s usually recommended the best way to feed them is to do so yourself. It’s crucial to understand that it’s common for patients with late-stage dementia and Alzheimer’s to eat or drink very little towards the end of their life.

Pain with Alzheimer’s

During the late stages of Alzheimer’s disease, it’s hard for patients to communicate, so often, you may not be able to tell when they’re in pain. Alzheimer’s patients may express their discomfort in many different ways.  Subtle signs such as sighing, grunting, or facial grimaces when they’re being touched to being overly upset or aggressive may actually be how your loved one is conveying discomfort. These are typical signs of frustrations being expressed through body language vs. speech.

Often patients sit or lie down in strange positions, typically guarding the parts of their bodies that hurt. If an Alzheimer’s patient is still able to speak, they may say such things as “not right” or “tight” in a short descriptive way, trying to make others understand. If you feel your loved one is in pain, talk to their doctor ASAP about pain management and other alternative therapies.  Such alternative therapies that Nevada Hospice Care offers are just a few of the small benefits to hospice care, such as massage or aromatherapy.

Fever and Infection with Alzheimer’s

Patients with late-stage Alzheimer’s disease tend to get fevers, infections, or often have a hard time breathing. Patients with Alzheimer’s facing the last few days of their end-of-life process often have a fever or difficulty breathing due to dehydration and pneumonia.

If your loved one has an infection, you may be curious about how and where to treat the condition. Many people may feel they should take their loved ones to a hospital. Nevada Hospice Care nurses and physicians can offer to treat such infections like pneumonia wherever they call home. It is imperative to have planned in advance for these types of scenarios with an advance directive. These advanced directives may ask for no treatment intervention in certain instances where they’re in the process of dying. Many do not want to prolong their pain or suffering, so make sure you are on the same page with your loved ones in advance.

The End Stages with Alzheimer’s

As a patient reaches the last stages of Alzheimer’s disease, communication becomes complicated. The Nevada Hospice Care team is trained to understand these signs and signals used through their senses, utilizing many techniques to soothe and comfort your loved ones with such things as familiar music, aromatherapy, and massage. Often just giving them something nice to touch and hold can be soothing. Our care team has been extremely successful with soft touches to stimulate a different feeling in the body vs. concentrating on what hurts.  By giving them a gentle massage or even just sitting with them, caressing their hands can be extremely helpful.

Hearing is often last sense to go, so our doctors at Nevada Hospice Care urge you to talk to them,  even if they don’t respond, we know they can hear you.

Additional tips and recommendations include:

  • -Talking to a Nevada Hospice Care doctor about minimizing hospital trips. This leaves you able to focus on making your loved one more comfortable in their own home as the illness progresses.
  • -Asking Nevada Hospice Care nurses or doctors for medications to keep on hand for pain, breathing issues, anxiety, or any other concern you have.
  • -Making sure the Nevada Hospice Care team has a copy of your loved one’s advance directives and understands their wishes. If the patient does not have an advance directive and is unable to speak or communicate, use your best judgment to plan their care with family members and doctors.
  • -Many times family can disagree about the treatment plans; if this happens, Nevada Hospice Care can act as or appoint a mediator.
  • -It is crucial you and your family completely understand the medical care plan. If you have any questions, do not hesitate to contact and ask Nevada Hospice Care.
  • -Writing their obituary might seem like a bad thing. Still, in reality, it helps give closure and highlight the patients’ life in a beautiful tribute.
  • -Choosing a funeral home can be hard sometimes, the location of the funeral services, a cemetery with a burial plot or cremation.  These are conversations we hope you have had with the patients or outline in their advance directives, making this process easier.
  • -Contact the people closest to them and their clergyperson if you feel these are individuals that the patient would wish to see. If you do not have a chaplain, Nevada Hospice Care can provide a chaplain who is trained in such end-of-life processes.
  • -Nevada Hospice Care team is around to help you and your loved ones if you need anything, just ask and be exact with your needs. This might be for them to feed your pets, fix a meal, or get just get your mail. These things can be a big help for you and make our team feel honored that we are in a position to help and make others feel good.

Your Feelings and Self Care are Important

Being exhausted as your loved one goes through these last stages of Alzheimer’s is entirely normal. It takes a lot of time and energy to care for someone with Alzheimer’s, it’s why we at Nevada Hospice Care encourage you to give up some of the rope and let us do what we do best. Taking care of your loved ones.

Caregivers can often become exhausted due to their lack of sleep, anxiety, and stress. All of this can make you feel burned out and depressed. This is just another reason we at Nevada Hospice Care stress the importance of in-home hospice care. We allow you to let down your guard, knowing we have everything under control so you can find time for rest. Take care of yourself. Get enough sleep, see your own doctor, and talk to those close to you about how you are feeling. Self-care in these circumstances is necessary and in no way shape or form selfish. Your loved one wouldn’t want you to fall ill due to their illness. If family or friends also offer help, do not be shy or brave, take them up on it.

Speaking with Nevada Hospice Care about in-home hospice care is not you giving up, or quitting, its to let you take some time to do other things you need to do. Its self-care.  You might inquire about our bereavement services for you and your family to provide counselors in this time of need. Don’t be afraid to use the support that Nevada Hospice Care teams have to offer you and your family. Its why we are here, giving us the honor to share the end-life-process with those that need it the most.

It’s normal to have many different emotions while your loved ones are dying. You may feel angry, sad, confused, cheated, or all of them at once. In late-stage Alzheimer’s, most patients can’t speak to or even recognize the people whom they are the closest with.  This makes it much harder to say goodbye and to make peace towards the end-of-life process. It often feels like you’ve been saying “goodbye” for years, but do not let this stop you from expressing your feelings. Know that love transcends words and can give comfort to those who still have cognitive difficulties.

Many people feel relief the end-of-life process has finally come to an end. When this happens, do not feel guilty about this natural reaction. Understand that this is a prevalent feeling and is confusing for many. If you are having strong emotions that you can’t understand or handle, you should speak with our specialists in our bereavement team or a family member or friend.  Do not let these misguided feelings tear you down; your loved one would not want this.

Grieving after Alzheimer’s

Grieving after death is entirely normal and necessary. This process can range in a wide variety and be very different for everyone. What you must understand is there is no wrong way to grieve a loved one, no time limit, no feelings that are not valid. It’s common to feel a sense of emptiness and loneliness, seeing how the care you provided took up most of your time. With time to think often come thoughts of, “what if,” “maybe if I,” or “I shouldn’t have.” These are common thoughts, but you need not blame yourself or linger on what could have or should have been done in hindsight. Know you did the right thing, and your loved one is no longer in pain. Remember the good times you had and hold onto those.

Grief is different for everyone, so don’t put expectations on how you should grieve or for how long. Know that the Nevada Hospice Care team is always available to help you. This includes your friends and family who feel grief as well. Remember that Nevada Hospice Care doesn’t end when your loved one dies. We offer support and counseling to you and your family for the first year after your loved one’s death.

Contacting Nevada Hospice Care for Alzheimer’s

Contacting Nevada Hospice Care to help with all of your Alzheimer patients’ needs is easy.  We provide a 24 hr, 7 days a week answering service when we are not physically in the office. We also have a convenient online contact and referral sheet directly on our website.  We encourage you to contact us sooner than later as Alzheimer’s can progress quite quickly sometimes.  Allow us to make you and your loved one comfortable in your own home and allow them the dignity they deserve.