I invite you to log onto the home page (see sticky above for easy ways to do it)- www.thealzheimerspouse.com - and read today's blog. Please add to the list here on this discussion.
From the very beginning, as a caregiver, maintain your contacts with the non-AD world as much as you can. Many of these will fade away eventually, but you need them for as long as possible. Plan time or yourself. Take advantage of the serendipitous moments but they will become nonexistent and you must have time for yourself, even if it does have to be scheduled
The 5th item talks about emotion: "You may experience one or more of a range of emotions – confusion, anger, loneliness, sadness, guilt, and depression. We all do – you are not crazy; you are not a bad person. These emotions come with the territory of being an Alzheimer Spouse. "
Joan has a good rule that we don't discuss Religion on her blog. But like AAA it is impossible to seperate our emotions from beliefs that we might have in a Higher Power, a Spiritual Power, Prayer for each other, Blessings from our members, etc, etc,.
Do not neglect the emotional strength you can gain from a personal belief in a Higher Power. We do not want to argue or debate this subject but don't fail to recogonise it as a big part of your existance as a Personal Caregiver and especially a Spouce to you LO.
An early symptom that is not discussed enough but IS a big one with younger onset dementia and DOES have a big impact on a marriage is - Job Incompetence and Being Repeatly Fired from Work.
If your spouse (who had been gainfully employed) suddenly cant keep a job, get a medical evaluation!
Not being able to keep a job (for an unknown reason) puts a tremendous strain on a marriage. At least once you know the cause of the job incopetence, it can make the loss of family income a little easier.
When you get the diagnosis you have been dreading, don't stop looking for ways to delay the progression of the disease.Medications, clinical trials and further medical testing all have the possibility of helping mood and behavior as well as memory function.The doctors don't yet have all of the information to differentiate the AD diagnosis from other forms of dementia.My husband has now been diagnosed with Parkinson's as well, and the medication (Sinemet) helped him for 6 months. Then of course, it increased his agitation (who told me that it could? No one. Trial and error)so we had to reduce the sinemet and add an antipsychotic(seroquel)
So, read, read and read some more. Listen to others' experience, and be an educated consumer of Alzheimer products and services.
Don't accept bad treatment from your LO, just because he/she has a diagnosis of AD.It's about that guilt Joan spoke of.For a while, I thought I had to listen to my LO's upset with me, because I am healthy and he is not.Our AD loved one is not rational,don't respond as if you expect him to be.
Dignity is very important to your LO. Encourage any skill that is present, for as long as possible. We all need to feel useful and productive.Don't do tasks your LO is still able to do, even though it takes longer or may not get done for a while.Phyllis9