Of all of the stages of Alzheimer’s disease, late stage progressing into end stage Alzheimer’s and death may be the hardest to understand. There is no other outcome for this type of dementia. Every persons journey is different and unique but the destination is the same. Death. You may ask, why do I find so many different descriptions of late stage Alzheimer’s Disease and death.
There are the official, accepted versions that most doctors or Alzheimer’s organizations will tell you. These are often are generalizations and worded to ease the reality of the what will happen. This type of information is a good introduction but I’d rather hear the cold hard facts.
The official descriptions of late stage Alzheimer’s disease, that the end is near and finally death are based on a collection of averages. A generalization of how the average person with Alzheimer’s will decline and die. The truth is we are still in the stone age when it comes to understanding Alzheimer’s disease.
You can find more realistic descriptions here (I will be adding more about this) and at other blogs and forums. Often discussed are what the person with Alzheimer’s will go through as they approach death and and finally die. You will see that each person with Alzheimer’s has a unique experience. We only know what the caregivers and family members describe. Not what the Alzheimer’s patient experiences.
There are so many factors that contribute to the progression of Alzheimer’s and death. It may depend on what type of care the person is getting. It depends on what areas of the brain are effected and to what degree. Any additional health issues the person with Alzheimer’s has.
People with Alzheimer’s pretty much die from the same things everyone else dies from. Things to expect are pneumonia, low sodium, low potassium, congestive heart failure, kidney failure, systemic organ failure. Any preexisting conditions like diabetes will be harder to manage.
The immune system declines so people with Alzheimer’s disease become susceptible to other infections. I wish there was a more favorable outlook I could give you. Some people do have what looks like an easy death and just drift away.
As Alzheimer’s disease progresses most or all memory related abilities degrade. Normal bodily functions are the exception not the rule. The person with Alzheimer’s dementia totally relies on someone to do everything for them. They need to monitored and cared for every second of the day.
Late stage Alzheimer’s patients may constantly stare or seem as if in a trance. This may not indicate anything. They sort of trance out. Almost like a day dream state but deeper.
They may not respond to talking or normal noises. You can look right in their eyes and be a foot or two in front of their face. You can talk to them and they seem not to respond. They often drift in and out of this trance like state.
They may also come out of it if there is an unusual sound, movement, a flash of light or the light turned off. I found that my mother, would at times, not respond if I talked to her. But if I snapped my fingers she would come out of it. As if she was somewhere else or was sleeping with her eyes open. At times it seemed like a young child when they sit in front of a television and get so involved with what they are watching they enter a trance like state.
My friends father had Alzheimer’s and didn’t respond to sounds like the finger snapping. But wave your hand quickly about a foot in front of his face and he would snap out of it. I would often wonder if people with Alzheimer’s have out of body experiences.
Eating and drinking will most likely become a problem. Being able to take any kind of pill may be impossible. Most medications have a liquid form you can use.
My mother could usually eat but she had false teeth and it was a daily game to get her to let me take them out to clean them. When it came time to replace the false teeth it sometimes took several attempts. She just didn’t understand. So I would try for a few seconds and if I didn’t get them in I would just try again 10 or 15 minutes later.
No arguing or fussing. Just accept the fact and try later. Act happy that they let you try. Even if they bite you just laugh if off. No big deal. If you try to long or make it unpleasant it will only make it harder on both the patient and the caregiver.
Occasionally she would forget how or just not want to chew. A few times I couldn’t get her false teeth in and she needed to eat. That’s when I would use a juicer and organic fruits and vegetables. She really liked when I juiced. We juiced everyday anyway. Once in a while she wanted it but she couldn’t remember how to drink from a glass. Even if I held it for her.
You might want to get a couple of what I call sippy cups. Often used for young children. They have a screw on top with a spout to sip from. If they get knocked over or dropped they don’t spill and make a mess.
Sometimes she even had problems using a sippy cup. So I got some of those large plastic eyedropper like things they use to give kids a dose of medicine. I would sit down with her and I would give her fresh juice using the droppers. Then all of a sudden she would start eating again.
As long as the person is getting sufficient liquids and nutrition the need for feeding tubes and IV’s can be put off. They may sound like a good solution but they come with there own set of problems. Like trading one evil for another. Many times a feeding or drinking problem, like the disease itself, occurs in cycles.
It is easy to say put the tubes in but if you do there is a much greater chance that regular drinking or eating will not resume. There is no substitute for real food. Even if it isn’t solid food and you just use fresh homemade juices.
Using fresh organic juice made from fruits and vegetables is best. This get high nutrition into the blood stream almost instantly. It takes very little energy to digest it. I feel this should be mandatory because it makes such a big difference.
Eating and drinking problems happen in cycles too. I doubt a care facility will tell you that. They likely don’t have adequate staff or time to dedicate to one person to get the Alzheimer patient through the cycle. Even though it may only last from a few hours to a few days.
A care facility will probably just tell you of the problem and suggest that the tubes be placed. That’s why I took care of Edith at home. I took the time, made it fun for her and got through it. Once the cycle has passed it may be weeks or months before it happens again.
If the person is still mobile imagine how much easier it is to take care of them without the tubes. Even if they can’t get out of bed it’s easier. Not to mention the kind of nourishment they get can’t compare to real food. Don’t believe anyone that says different. Plus this is another pathway for infection.
Something else to think about. They have so few pleasures left in their life. Putting in tubes is going to take away the pleasure of taste. This will be one less way you have to connect with them and get their attention. One less surprised look on their face when they taste something they really like. One less smile. One less tool in your tool box to change their mood.
As time goes by and the person gets closer to late stage Alzheimer’s Disease and death, more areas of the brain may be effected. There is no set progression, no map, no ordered list or countdown to departure. The pattern of destruction is different in every person, even in twins. In some people Alzheimer’s seems to focus it’s main attack on memory, emotions, reason and other things within the head.
Other people might have other areas of the brain effected also. Were the rest of the body has problems. Like organ function, muscle control, bowel control etc. The brain can tell a single specific organ or a complete system to work at reduced efficiency or completely shutdown.
If, or I should say, as the parts of the brain that control proper body function are effected things can start to decline. Sight may be effected to the degree of blindness. Any or all of the bodily functions or organs may not work well. Urine may concentrate and become strongly colored and have a strong smell. Even with what seems to be adequate liquid intake.
As these things stop working as well as they should energy levels usually decline. The person may hallucinate and see things that you can not see. They may become unconscious intermittently or stay that way. Just when you think it’s permanent they wake up again.
Breathing may be shallow or a struggle. The lungs may start to sound like there is fluid starting to collect in them. Blood pressure often starts to lower and as it does the heart may try to pump harder or heart rate may decline too. Even if they are put on a breathing machine they may be gasping for air. Some people are lucky and just drift away while others seem to struggle to hang on.
If a natural death is taking place the brain sends out chemical messengers that tell the organs to shut down. If the heart stops and electric shock is used to try and restart the heart it is thought these chemicals are neutralized. If this occurs the body can often be kept alive. The automatic functions like the heart beating and breathing may resume. Often a breathing machine will be hooked up and the person may be breathing above the rate the machine is set at.
That does not indicate life. It is most likely the person is not there. Families often keep the body alive for days or even weeks refusing to accept the person has died. Continuing to return to the hospital everyday and stretch out the ordeal. As the person is actually dead with the machines giving the appearance of life.
Even when you are prepared for a death of a loved one it can be hard to accept. Turning the machines off isn’t easy. Everyone needs to deal with it in their own way and do what they feel is right. The person making the decision to remove life support equipment for the Alzheimer’s patient or any loved one will remember it for life. I know I’ve had to do it for family members. Each time was different and difficult. There is peace in knowing their suffering is over.
If you are the one that must make the decision my heart goes out to you. Do the best you can and come to peace with it in your heart before you have life support removed. Be at peace with it and don’t be hard on yourself. It is probably the hardest thing you will ever have to do. It is a great honor and a blessing. It might not feel like it a first, but I hope you come to see it as a blessing, as I have.