The tragedy of Alzheimer’s disease is that it is a thief…the condition steals so much from those who are struggling to live with it. Not only does it steal a person’s ability to remember day- to- day activities and responsibilities; it steals a person’s independence. As the disease progresses, it takes away the individuals ability to do things on their own without supervision. Giving up their independence is difficult…not being able to drive or live alone is hard to accept; no one wants to be dependent on others, in this way. It is necessary though, so that no one is hurt or killed by a moment of forgetfulness or confusion.
Alzheimer’s disease is one of the most common forms of dementia-there are over 50 types some of which are rare. Words and thoughts become jumbled and communication is hindered. It is a progressive disease and as time goes on…the effects become more devastating to those who are afflicted with the illness; and, to those who love and support them. Some people who are healthy joke when forgetting something simple saying, that they have Old Timer’s disease. It really is no laughing matter. And truly, there is no age limit on this disease…there is something called early onset of Alzheimer’s disease…it can happen even at a relatively young age.
If you wish to learn more about Alzheimer’s disease check this out: http://www.alz.org/index.asp . Seeking early medical intervention can make a big difference in how the disease progresses; talk to a doctor if you suspect a loved one has a form of dementia. Testing can be done to diagnose the condition of dementia or Alzheimers fairly quickly. There are some medications available that seem to help some patients have a more positive quality of life longer. Talk with a health care professional about options that will benefit your loved one.
Caregiving for someone who is living with Alzheimer’s is a labor of love-an intense, labor of love; and it is draining. The disease steals a person’s memories of people, places and events. A caregiver who provides support discovers that the care required soon can become overwhelming; as more functions and abilities become impared. If it is at all possible, having more than one regular caregiver helps to avoid burnout and overload. Try to balance the main cargiving duties between 2 or 3 familiar faces. Encourage the caregivers to seek “me” time as a way of recharging their batteries. There is no shame in seeking out adult day care or respite care to help give the caregiver some much needed “down time”. It is exhausting to be on watch all day and all night. See this link for help with understanding the demands of caregiving: http://www.nia.nih.gov/Alzheimers/Publications/caregiverguide.htm or http://www.caregiving.org/. Families need to come together soon after diagnosis to discuss how to handle and approach day-to-care, as well as medical care; while the patient is still able to voice his or her concerns and wishes regarding both long term and short term decisions.
It is also important to remember that conditions are constantly changing. The losses mount up…so each day and each moment is precious. This is a great time to encourage the person with Alzheimers to document their personal memories either by journaling, or by, recording on tape some of their important or precious memories that they want to share with others. Maybe spend time together working on a scrapbook or memory book with pictures and short written words underneath the chosen pictures. This is a good bonding time. Pictures of people that are important in their life is a good way of keeping faces and names in front of the patient. They may be asking often who the people in their life are. As time goes on, they may not understand words used to describe relationships. This is hard; but predictable, words and their meaning can become confusing and mixed up. It is hard to know what is helpful and what will trigger agitation for each person…it is all very individualistic. No one knows your loved one like you do…you will have to use your judgement often to make decisions about what is beneficial and what causes distress.
As the person starts experiencing significant cognitive impairment or memory losses; a feeling of being lost or helpless can set in. Fear and embarassment are part of the daily experience. The abilities and skills that the person is still able to use are helpful to giving them purpose and meaning. Do not take that away from them as long as they are safe in performing those chores or activities. People need to build upon the positives as much as possible. Allow the affected person to be as independent and as safe as possible…remember to be mindful of their personal dignity. It is helpful to try to treat the person in a way, that you yourself would wish to be treated if you were in their position. Don’t talk down to them; or worse, use baby talk. Repetition and an unending supply of patience is the key. A calm voice and demeanor helps keep things on an even keel.
Use anything that is important to that person to keep reliving memories or moments with this person. Talk about experiences, use old photos, home movies, audio tapes to keep the person connected to those important to them. Maybe video tape or record some new conversations or activities together; these may be helpful to both the patient as well as family members later when things get more difficult. Music is an important part of the equasion for many individuals. Music has a special ability in the brain to trigger emotional responses of past experiences. It also can have a calming effect on some people who are affected by Alzheimer’s disease.
One of the hardest parts of loving someone with Alzheimers is getting to a place to where that person can’t remember who their loved ones are. This is devastating…so anything you can do to prolong the time that you have during the “remembering years” is critical. Remember, the forgetting is not something that they can control. Don’t take it personal. As the forgetting starts to happen more often…cling to those special little windows of time when they are able to surface through the fog and say or do something that let’s you know they are aware of who you are and how important you are to them. I like this site as it is supportive to the caregivers of the world: http://www.thoughtful-caregiver.com . Do you do anything special to preserve memories?
I read a wonderful book with a personal window into the world of caregiving by a woman who shared caregiving responsibilities with her mother, for her father, who is afflicted with Alzheimer’s disease. The insight that she gives into the behind the scenes dynamics are important for people to know who are going through something similar. The book was uplifting and heartbreaking at the same time. I like the fact that they worked together as a team to try to make every day and every moment count together as they provide care for him. There were many helpful tips in the book regarding ways of practical care. If you care to read the book it is called, Measure of the Heart-A Father’s Alzheimer’s A Daughter’s Return. The book was written by Mary Ellen Geist about her family’s very personal experiences. The book examines they journey and the grief they experience, as well as, the positive aspects of making the commitment to take on the challenge of providing familial caregiving.
I think the best part of the book is that the mother (wife) and daughter are constantly examining or acessing their experiences and it’s effects on both of them as caregivers as well as the patient. It is the day to day examination of what is in the best interest of all concerned. What works for them may not work for another…but, there are some commonalities that apply to many in their situation. The book was published by Springboard Press; their website: http://www.SpringboardPress.net . The author’s website is here: http://maryellengeist.com/content/index.asp .
Do you have experience with someone you care about living with Alzheimer’s? I think the thoughts or fears of being forgotten is frightening, for the patient as well as their loved ones, is strong. Do you have any tips or encouragement for others going through the same type of situation? Please share!
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Your post is going to touch a great many hearts and lives, Rainy!
When I was earning a living by doing massage therapy I had a sweet little client who had fallen into the abyss that is Alzheimer’s. There were photos and posters all over her nursing home room to help remind her of her life but Esther had drifted to a place between that life and the next…
One of the things I did on her behalf and for her family was to journal after each session with her. It was a two page account of our time together so the family would know someone actually cared about her. One page would be my account and the modalities I’d utilized, replete with the cute things she did and said. The other page would be my idea of Esther’s perception–’who is that woman who comes with regularity, brings lotions that tickle my nose and giggles so? She brings a bag-does she plan to move in? My room is already smaller than the house my husband and shared for all those years…’
The family assured me that they took comfort in this process; for me, it was cathartic. I could leave my sadness for this family on the pages of the journal and return to the bright sunshine of my own precious life.
God bless all those who are touched by this draconian and bleak diagnosis.
Love,
Mother Connie
[...] more information please read about the tragedy of Alzheimers through one of my previous posts here: http://www.writewhereyouareblog.com/?p=2127 . Or go to one of these sites: http://www.alz.org/news_and_events_world_alzheimers_day.asp , [...]