I am entering uncharted territory in my sweetheart's and my long journey of ALzheimer's. Two weeks ago he began t o sleep more, have swallowing difficulties and was taking a long time to consume his meals. He was given blood workup and found to have very high sodiium levels. We decided to have an intravenous drip of water for 36 hrs. t o see if his body could rally . Right after the drip was over, he was very alert and he and I had a wonderful day when I visited. I call that day a gift from God. Since then he continues to lose weight , has gone more lethargic and continues to have swallowing problems. We called in hospice and they are now assisting the VA staff in caring for him and making him comfortable. We have made the difficult decision of not having a feeding tube if his swallowing difficulties get worse and he can no longer be fed orally.
I thought I knew all about the pitfalls and end of life possible behaviors. It seems I again am proceeding day by day not knowing when my dear one is leaving us. I have asked the staff and hospice to try and let me know when death is immenent as I want to be with him if possible. I want him to know that I am there with him and he won't have to die alone. I do know that every ALzheimers sufferer is different and we can't predict his passing . Can anyone advise me on any experiences you have had as to the possible problems that may occur .
We all think we have g one through the worst but this is so distressing. I don't know how I will cope when he is gone. Its hard t o explain but just having him here on earth has made me feel he is still a source of strength as he always was during our years of joyous marriage. I thought he had been gone from me for a long time but now that I am losing him physically, I am once again desolate.
joyful, those who have spouses that are further along and those who have lost their spouses would be in a better position to answer this. I am so sorry that he has declined even more. Hopefully, the others will be here shortly to tell you what happened with their spouses. My thoughts and prayers are with you and your family.
Joyful, read "Our Last Move" and "Hospice Care" that I brought to the top so that you might get some insight from, along with feeling the love and devotion of our "family" here....
There is a booklet that may be helpful, "Hard Choices for Loving People". It was written by a chaplain who has worked for many years with terminally ill patients and their families. It can be downloaded for free at:
http://www.hardchoices.com/
Click on "Complete Text (PDF)"
I am glad you have hospice with you.
I have also tried to find a link to an article I've seen on the Alz Assoc boards ... I can't find the link, only the entire article. It's long, I'll have to split it up into sections.
A Caring Environment: Supporting your dying loved one by Michael and Barbara Davis ElderHope, LLC and ElderHope.com
“The act of dying is also one of the acts of life.” - Marcus Aurelius
As your loved one is in the process of dying and it seems that there is so little anyone can do to help, the following pages may help you create a comforting and caring environment for your loved one and those in attendance.
This packet consists of information about the dying process itself, practical things you can do to foster a comforting environment for your dying loved one, some material that we hope will be inspirational, and a place to write down numbers of people that you may want to contact during and after the dying process.
In reality, though, you know your loved one. You know their likes and dislikes, personal beliefs and needs from the past, and honoring those preferences will also help honor this environment.
Lastly, remember that our task as caregivers is to help our loved one peacefully through the labor of dying. Rather than disturb this process through unwanted interventions, our goal is to peacefully enable their journey forward and bless their transition from this life.
The Dying Process: Signs and Symptoms
The process is individual. We all want to know what's going on for our loved one. This is natural and understandable. However, each person is different and progresses through the dying process uniquely. Our loved one may experience sudden and precipitous changes without any clinical signs of change. On the other hand, the changes may occur over such a long period of time as to be barely noticeable. So then, even professionals find themselves frequently surprised by the magnitude and suddenness of the changes that occur in a patient. Medical professionals familiar with your circumstances, though, are the best ones to guide you in interpreting what is going on for your loved one. It does help, however, to have some idea about how things generally progress. Here, then, are some things to look for that indicate that the dying process has actively begun. What follows are only stereotypes of the clinical signs of dying – one may have all of these signs or none at all; they may show them in the order given or no order at all. A person may come close to the end, and then turn around entirely (though, that, in our experience is unlikely).
Early Signs. The dying process is often heralded by changes in the major body systems. The largest body system is our skin and it often offers the first signs that our body's systems, as a whole, have begun to shift. Like flowers in spring, the skin shows that changes are afoot. The skin becomes less pliable, more like “tissue paper.” This is often because the pulmonary and circulatory system are less able to pump blood to the extremities and to keep them well nourished.
Similarly, as the body's systems begin to change, patients are less able to enjoy or even tolerate eating. The body's systems become more and more focused on stasis (keeping things going – the next heartbeat and the next breath) and are less able to focus on nutrition production. The body knows intuitively that it's balance is threatened and begins to protect itself – intensely guarding the most essential processes. In order to turn food into nutrition the body can handle, the body turns on its own special ovens and breaks the food down into component parts that it can then use. Unfortunately, this process takes enormous amounts of energy, energy that a dying person does not have. A well person easily uses their body's furnace to turn food into substances that it can use and the process is efficient. That is not the case for those who are dying – their one task is the next breath and the next heartbeat. The body does not have the excess energy to process food. Again, as people move closer to the final chapter of life, they are less and less able to enjoy and tolerate eating. This is normal and natural. Many well-meaning persons try to feed their loved one, even force feed them, when their body can neither process nor enjoy that food.
Signs that a patient is imminent. As death draws nearer, other, more obvious changes begin to occur. They may not happen in any particular order – each person is unique. But, there are certain clinical markers that indicate that death is now imminent (can happen anytime). Some of these signs follow:
• Decrease in kidney output. The kidneys are less and less able to process fluids. Life cannot continue for more than a couple of weeks after the kidneys have shut down.
• Decrease in blood pressure or pulse. This often fluctuates and may not be an indicator of how soon someone will die. But, it is a certainty that life cannot be sustained without enough blood pressure to perfuse the body with blood. When the skin “mottles” or turns a darkish tint of blue at the fingertips and toes, this means the skin is mottling and that death could come anytime. Blood is no longer getting to the extremities.
• Changes in respiration. Those who are actively dying often have what is called apneic breathing. Their breathing starts and stops in irregular intervals – it may stop for twenty seconds or more. Additionally, the breathing process may be accompanied by unusual sounds and other patterns. Patients may have what is called “fish out of water breathing” or their breathing may sound like an old style coffee urn or a percolator. This is normal for the dying process. It is often highly disturbing to the family as it looks so agonizing. The evidence seems to show, though, that patients do not find it painful. It seems much worse for the observer than the patient. One of the beauties of hospice is that our intimate understanding of this process allows us to treat certain aspects much more knowledgeably. In this case, a good hospice may be able to help with this process by the administration of things like morphine and drugs that seem to dry up some of the body's secretions (Scopolamine, Atropine). This may help to decrease some of the rasping sounds. It should also be added that tube feedings only make this problem worse and should be discontinued at this time. As a general rule, when these kinds of breathing changes begin to occur, it means that death is perhaps hours, to days or a couple of weeks away.
• Changes in level of awareness. As patients near the end, they may experience many changes in how they relate to others and to their world. First, they may withdraw more. Or they may have a flurry of activity. The withdrawal seems the most common. This often frustrates families and they want medical staff to “do something” to keep mom more alert. Such interventions act against nature, may accomplish little, and perhaps keep the patient from getting needed pain medications. They rarely serve the needs of the patient, who, as noted above, is focused on two things: breathing and heartbeat. The patient may not have the necessary wherewithal to engage in communicating. They should not be made to do so, either through medication changes or unnatural interactions with family/friends. Their abilities along the way should be honored. Second, patients may become more agitated. Care for this symptom is absolutely essential, and its progress should be monitored by competent medical personnel. It is beyond the scope of this document to address this. Agitation may indicate that a new pain intervention needs to be tried. Third, patients often become aware of transcendent realities. Patients often speak of making journeys or of seeing deceased loved ones or of seeing Jesus, etc. Some people attribute this to medications. It may be that. It may also be a function of decreasing oxygen to the brain. But, regardless of the explanation, it is real to the person who is dying. Dialogue with them about what they are seeing if they like: What does it look like: What is their loved one doing or saying to them; What are the surroundings like? Many people find that these conversations are enormously comforting after the person is gone... And, besides, what if what they are seeing is entirely real? Don't you want to know?
• Pain. Pain often increases as a person is dying. This may be due to the disease process or it may be part of the dying process. In any case, it is essential that this be aggressively treated. The ability to measure pain can be difficult. Many times, the signs are non-verbal. Hospice staff, among others, are experts in assessing for such pain, having both a clinical baseline for monitoring pain, as well as a breadth of knowledge in its treatment. In order for a person to die comfortably, it is absolutely necessary to aggressively anticipate and treat pain in order to prevent pain spirals. When families or professional caregivers will not aggressively treat the pain, their loved one will generally find that death is unnecessarily prolonged and arduous. To be fair, though, while we advocate for aggressive pain management, overmedicating is equally to be avoided. All things being equal, though, we would err on the side of comfort.
These are among the most noticeable and general of signs that someone has entered the active dying process. Again, each person experiences this process uniquely and should be treated so, with respect. The next section concerns itself with creating an environment where your loved one feels as safe and comfortable as possible during the dying process.
What can we do to help?
Surroundings and Senses. As a person becomes weaker, bedridden and enters the process of dying, surroundings seem to close in. Sensitivities may increase significantly. Odors, noise, glaring lights, background sounds from the TV, and pain may all intensify for your loved one. Being aware of the dying persons’ five senses will help create a more soothing environment.
Whenever possible, check the lighting…soft lighting is best. Although most hospitals use fluorescent lights, turn off unnecessary lights and adjust the blinds for more comfortable lighting. Shaded lamps using soft-colored bulbs can also help. Pictures of family and friends placed at eye level may also create a sense of comfort not only for the dying person but also for those who come to visit.
Sound can be especially important during this time. Previously unnoticed sounds such as ringing telephones, loud voices, or trays clattering may now be extremely irritating. Look for signs of discomfort on the dying persons’ face. One person may welcome the chatter of family voices in the room whereas another may respond with anger or anxiety. Likewise, soothing music may be relaxing or bothersome…ask or look for signs. As the person nears death, harp music with no recognizable melody may be especially therapeutic and calming.
Experts in the medical field also state that of the five senses, hearing remains with us the longest. So, reassuring the dying person of your presence, verbalizing your continued love, or sharing special memories can be very meaningful for your loved one and yourself.
Although a dying person may be unable to reach out and hold your hand or touch your face, their need to be touched is still very important. This may be even truer now because they are physically unable to touch you or ask for a reassuring hug. Experts report the value of therapeutic touch during this time. Although a trained therapist usually does this, your gentle touch can be very calming and a reminder of your loving presence. Simply holding your loved one’s hand can offer a sense of warmth and tender connection. Stroking a dying person’s forehead may not only bring comfort but also assures their value as a human being, still physically in our presence.
Personal preferences in taste may drastically change as death approaches. During the dying process, the body requires less food and fluid intake. However, attending to oral hygiene, moistening their lips, and offering ice chips when appropriate can bring comfort.
As your loved one nears death, odors in the room and their sensitivity to those odors may significantly increase. Body care and some diseases can create odors that will be alleviated with attention and room ventilation.
If possible, appropriate aromatherapy can be especially beneficial now for the dying person and caregivers. Certain oils can affect the limbic system of the brain and evoke feelings of peacefulness, spirituality, or joy. Again, personal preferences vary so check with or observe your loved one for confirmation.
Many people express fear about pain in the dying process. If possible, discuss your loved one’s concerns and wishes about pain control while she or he is able to communicate those thoughts with you and the primary physician. The health care provider should be able to address pain control issues so that your loved one can generally be assured of a pain-free dying process.
An important consideration is to also minimize pain for the dying person by avoiding constant cleaning, turning, pillow fluffing or bed angle adjustments. As much as we want to do something in the hours before death, sometimes simply being with your loved one is everything.
Family time. Creating an atmosphere where family and friends can visit is significant for all involved. Honor your loved one’s wishes as to who visits, the length of time of each visit, or the number of visitors in the room. Whenever possible, allow children by the bedside of your loved one, if they are comfortable with this. Perhaps keeping the number of visitors small at any given time will be more meaningful than a roomful of visitors. Allow private time for individuals who need to be alone with the dying person. Encourage talk about who this person was in your lives, the impact he or she has made for you personally, reminisce about humorous times and acknowledge honest feelings of sadness.
Also, try to be sensitive to the feelings of your loved one, who might actually prefer to be alone at the moment of death. Occasionally, a dying person will “wait” to die, until the last visitor leaves the room. Although this may be a hard choice for a caregiver to honor, try to remember that it is the dying person that we are trying to help.
Meaningful Activities During this time when so much focus is on the dying person’s physical needs, attention can also be directed towards their emotional and spiritual needs.
Reading a favorite book to your loved one can be calming and reassuring of your presence. Favorite passages read from the Bible or other religious texts can also offer spiritual reassurance.
The simple act of listening can offer gifts that we all too often underestimate or dismiss. In the months or hours before death, people may speak in symbolic terms about feelings or concerns that they do not communicate in concrete terms. In the book, Final Gifts by Callanan and Kelley (1992), we as caregivers are encouraged to actively listen to the dying not only for expressed words but also for hidden meanings. As you listen, help your loved one explore their feelings and understandings. Try to neither judge nor negate their thoughts. Just offer a caring, listening ear and an open heart.
Praying with or for your loved one in their presence holds special meaning, particularly if they are unable to pray. Perhaps singing one of their favorite spirituals would also be a source of comfort for your loved one. If a certain place of worship has been important in the dying person’s past, ask for a visit from a representative of that religious institution.
Humor, as appropriate, can be very therapeutic in reducing stress and pain. Perhaps watching a funny movie, telling humorous stories from the past, or noticing moments of humor in daily events could provide momentary blissful relief for everyone!
In addition to the above, guided imagery, specific relaxation exercises, listening to tapes of sounds from nature, light massage, and providing quiet, can all help the dying person make a more peaceful transition from this life.
In conclusion, however, our task as caregivers to the dying is to help them and bless them on their journey. Unnecessary interventions may increase their pain or hinder their transition. Truly, if you are able to provide your caring presence and reassurance of your continuing love to the dying person, you have offered a sacred place for making that journey.
Joyful, These words from Sunshyne's posting are, I think, particularly significant.
"Lastly, remember that our task as caregivers is to help our loved one peacefully through the labor of dying. Rather than disturb this process through unwanted interventions, our goal is to peacefully enable their journey forward and bless their transition from this life."
Sometimes dying persons need "permission" to leave. If you're comfortable doing so, it might be helpful to tell DH that it's okay to go, it's okay to rest now, that you'll be alright. In my experience, the ones who wait to die until everyone is gone are those who don't feel their loved ones are ready to let them go.
I'm praying for you and your DH as you see him through to the end of the horrible AD journey.
Thank you all for your responses....especially Sunshyne's. I have gleaned much information and now I will print it and shsre with my family. I don't know how long this stage will last but I have put my dear one into God's loving arms and will be grateful for any good days that I may have with him. I will try to be sensitive to all aspects of his environment and make his surroundings as comfortable as possible. This may be the most difficult emotionally for me and my family but somehow we will get through it and I will try to be strong for my love.