Unfortunately I have not only watched many family members fight this disease and most have lost that fight by now, but now it is getting even closer to us as our mom is fighting this disease and it is in full throttle.
I don't claim to know all there is about this terrible disease, but I do know the impact it has on families and the ones who are caring for these sweet people. I've tried to read as much as I can about this disease and at least educate myself in the best way to respond to mom and support her along with my sister who is the primary caregiver for her when my step-dad is not at home.
Alzheimer's disease is a progressive brain disorder that damages and eventually destroys brain cells, leading to memory loss and changes in thinking and other brain functions according www.alz.org research. There is no cure at this time for this disease. Research and funding continues, but there is so much left to be done before we see this disease truly diminish.
It's a very sad disease, but sad more for the caregiver than the patient. It seems that once the patient has gotten past the initial start of this disease when they no longer are aware that they are forgetting or not processing things properly I believe (my opinion) they just become content in their own world and while they are usually in no pain, they don't really have a grasp on reality so the sadness (in my opinion) stops and they just live each moment with new eyes. However, for the loved ones and especially the ones in their day to day life, this is when it becomes even harder. These patients are usually difficult if not impossible to reason with and you feel you have already lost that loved one so you are forced to make decisions for them that you might not otherwise have thought about having to do.
It could be as simple as they can't find their sunglasses or new shoe strings to putting food in the cabinet with cleaning supplies or worse yet, forgetting about having something on the stove top and not remembering and potentially catching the house on fire or having a terrible accident. These things happen to people with this disease and it breaks my heart for anyone having to deal with this disease whether you are the patient, caregiver, or loved one.
As a caregiver, it can consume your entire life. You have to basically be on call 24/7, because remember, their brains aren't functioning like someone without this disease so they have no concept of time or usually day of the week, month, or even year. They will have random conversations and if you are low on patience, you might as well keep your distance. This is not a disease for the faint of heart or the impatient person. This disease will try every nerve you have. You have to be prepared to hear the same story and sometimes you have to be prepared to hear the same story with a different version. Also, one person might hear one version of their day and another person a few moments later will hear yet another version of their day. It's just part of the disease. You certainly can't take things the patient says personally or think that they planned to hurt your feelings (if they do) or forget important dates. They truly cannot help this. The disease controls everything about them even down to their appetite.
One of the hardest parts we have endured lately with our mom is the fact that she can no longer drive her car. It has been heartbreaking and scary at the same time. If we don't go with what the doctors have suggested and make sure she no longer drives and something happens, then we are just as guilty as if we had been driving when the mistake happened. If we do take the doctors suggestions we run the risk of her being upset with us. However, if you follow the process that the Memory Centers lay out for you it can take that burden off your shoulders and puts it on them. That's what they want you to do. that is why these wonderful places are there. They are there to allow you to love your patient while they do the hard stuff and hopefully keep the tension and irritability at a minimum. Please listen to your doctor and Memory Centers if you have one. They will make this journey a little better if you will allow them and you actually follow their instructions. They haven't been in this job and trained for it for nothing. When you don't follow their instructions it makes not only the patient more confused and agitated, but it can make the care giving that much harder. No one needs or wants that. Right?
Sadly, this disease will take the life of the patient. How long that takes, no one really knows. It depends on so much. I don't think any doctor can give a time table on the progression of this disease, but they can give you tips and tools that may help your journey go a little smoother (if that were possible).
I pray if you are reading this that you do not have to deal with this disease, but if you do, I would encourage you to read and research as much as you possibly can to not only help your loved one fighting this disease, but for the care giving as well and to support those that are there front and center.
If you know someone that is a caregiver, give them a break once in a while. If it is possible, you go sit with the patient and allow them some down time. Take them to dinner when they aren't caring for the patient. Give them a call to see what you can do to help. It will make a huge difference in many lives, I promise.
Prayers and hugs to all who have loved ones fighting this terrible disease and may your journey be as smooth as it possibly can be. This won't be an easy one for sure, but there is research out there that truly does give great suggestions on how to respond and react to the patient. It will give you support as the caregiver as well to know you aren't alone in this journey.
Picture courtesy of http://www.alz.org/research/science/alzheimers_research.asp
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