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The Final Stage of Alzheimer's and Dementia: 
Love is the Best Medicine
                                                                                        
Caring for someone in the final stage of Alzheimer's and Dementia from day to day, can be exhausting, frustrating, confusing, and emotional.  Determining the needs of your loved one may prove to be the most challenging of all, where at this point, the ability to communicate has most likely diminished, behaviors may have become more erratic or even combative, and the person may appear to be uncomfortable or fidgety.  In this final stage, the ability to move, walk, sit upright, etc., are most likely impaired, or non-existent, for that matter.  
So, many are left to wonder what they can do to help improve the quality of life for their loved one while preserving their dignity and providing stimulation, aside from meeting their basic daily needs.  
I would like to preface this by saying,  I am not a doctor or therapist, but I do know what it is like to try to occupy the heart and mind of an Alzheimer's/Dementia patient who is having difficulty relaying thoughts, or understanding their surroundings.  Upon reflection of my journey with my father, it has become very clear to me what was most effective in providing him with a sense of peace while assuring him that he was safe and loved, beyond the fundamentals.   
Many people have asked questions such as, "What kind of activities did you do with him in that state?", or "What can I do to be there for my loved one?".  This is where I feel that a very complicated disease can be simplified, to an extent.  We must adapt to them, just as they are adapting to their illness.

Here are some things you may want to consider while caring for a loved one who is in the final stages of Alzheimer's or Dementia, coming from a place of experience:

1. Take care of yourself first.  For example, on an airplane in case of emergency,  parents are instructed to place oxygen masks on themselves before they place it on their child.  The thinking is, you are of no use to anyone else if you have run out of steam yourself.

2. DON'T TAKE IT PERSONALLY!  It is likely that your loved ones may have verbal or physical outbursts that may seem like an attack on you, when in fact, it is not.  More than likely, it is just a symptom of the disease.  Remember that the person that you are caring for has diminished or warped brain capacity in such scenarios.  Try to remain patient, and use a soothing tone of voice to de-escalate the behavior, even redirect them with distractions.

3. Pay attention to the outbursts.  Because an Alzheimer or Dementia patient has difficulty expressing themselves, sleep disturbances, hallucinations, and atypical dramatic outbursts, may be their way of communicating to you that they have pain, or another complication.  In this case, be vigilant of unusual behaviors, and seek medical attention, if needed.  

4. Educate yourself on sun-downing, a real condition or phenomena that occurs at sunset with many Alzheimer's and Dementia patients.  At this time of day, you may notice that outbursts, restlessness, hallucinations, and fears become exaggerated.  Sun-downing  is a condition related to a person's circadian rhythm, where shadows may appear more intense as darkness falls.  At this moment or just prior, you may want to shut the shades and turn on lights around to help alleviate the fear associated with it, while sitting with your loved one and distracting them.

5. Create distractions that are soothing to your loved one.  For example, I have a dog that I found to be a wonderful stimuli for my father.  Being an animal lover and owner his whole life, it was impressive to watch him come to life when I placed the dog in my father's lap.  His eyes lit up as he his tactile sense of caressing his fur was activated.  Also, on bright days, we sat close to the window together and observed the outdoors.  All the while, when we did this, I would point out simple colors, wildlife, and noises that existed in nature.  But, be very aware of their response.  If they seem to get agitated or appear fearful, it's time to redirect.  Redirecting is something that you will be doing quite a bit, so be prepared for rapid changes and accommodate accordingly.  For example, playing music that they may have once loved at a low volume is a great way to redirect your loved one.

6. Be aware of the volume level, and the amount of people around in the same moment.  Alzheimer's and Dementia patients are easily over-whelmed, so be cognoscente of the level of noise or chaos surrounding your loved one and keep the stimulation minimal and simple.

7. Interact, play simple games, and talk to them.  Sometimes, it is easy to forget that Alzheimer's and Dementia are still a mystery in some ways.  Different schools of thought argue whether or not someone in the end-stages of these illnesses are aware, because patients may appear to be catatonic.  My belief is that they are aware, to an extent.  So, activities such as simple toddler puzzles, talking to them, singing, praying, or reading to them not only stimulates your loved one, but gives them a sense of self that sometimes gets lost in the illness.  Do NOT talk about them in front of them, as I feel it is demeaning and fosters a sense of helplessness.

8. LISTEN TO THEM, EVEN IF THE SPEECH IS SLURRED OR UNINTELLIGIBLE.  Everybody likes to feel that when they speak, they are being heard.  But, with AD or Dementia, understanding your loved one can be difficult, especially when speech is impaired or limited.  But, TRY...show them that you are trying!  Make eye contact with them, smile, nod, whatever need be, just listen and show interest.  This is a great way to not only show that you care, but that you are listening, and are somebody that can make them feel safe.

9. Set routines, while creating choices.  Nobody likes to feel helpless.  So, once you have established a daily routine (which provides a sense of security), implement choices as well, but not too many (two are sufficient).  By providing meal, clothing, or even seating choices, you are also furnishing your loved one with a sense of empowerment and independence.  This ensures that the dignity of our loved ones stays intact, even when all else may be failing.

10. Finally, the most important thing you can do...is LOVE THEM!  Be affectionate, never underestimate the power of love, a hug, touch, or loving words.  Sit close, caress their hands, hair, and face.  Make them know that everything will be okay.  This is the one thing, out of all of these suggestions, that I cannot emphasize enough.  Tell them how much you love them, show it, and give them a sense of peace with your gentility.  Ultimately, this will be the one thing you will be so glad that you did, as your love will provide comfort and safety to the heart of the person you adore.

These ten suggestions are centered around the idea of fostering love, respect, safety, and comfort, in an effort to not only preserve the dignity of your loved one, but to provide them with a sense of peace in the final stages of Alzheimer's and Dementia.  
Care-giving can be very challenging, but it can also be rewarding as well.  Learn what works for you and take it one day, one hour, one minute, at a time.  Educate and take care of yourself throughout this process, and remember that there are resources available to you through ALZ.org 24/7 at 1-800-272-3900. 


Finally, I would like to dedicate this to my mother who was my father's primary caregiver,  and an inspiration to us all.  
I love you mom, and I'll never forget you dad!  


 -Nicole