Dear Lori,

It sounds like you are a wonderful, caring, thoughtful caregiver for your mother. You seem to roll with the punches as well as possible for the circumstances. I am sure you have times of frustration, anger, and would love give up and on the worst days, for it to be over for both of you. I think that would be natural reaction.

From your comment, I don't see you trying to make things better for you or your mother by "making a joke" of your mother's situation, calling attention to her deficits etc. as the initial poster has done. I don't see how that can make a caregiver "feel" better. To me, as a Early Stage Alzheimer's Patient myself it felt disrespectful, unkind, & demeaning to anyone's dignity, much less a parent. It frankly "Scared the Hell" out of me. To think that my husband and sons could in the ugly years to come use me as their comic relief.

I can however understand how it would happen if there was some kind of underlying resentment about being in what anyone would see as a difficult situation.  Perhaps siblings not taking any responsibility, past personal difficulties between child and parent, etc.

Let me explain that I don't think most Alzheimer's Patients have the cognitive ability that the Early Age Patient has (onset early as 35 years old). I was 56 when finally diagnosed and had been complaining of symptoms for 7-8 years. (My doctor was floored when she reviewed my entire medical record and finally put everything together.)

We are diagnosed very early on because we know something is wrong and we keep searching for answers. We keep on asking our doctors, documenting the losses of memory and daily frustrations. The decline of work performance etc. Many lose jobs because they can no longer do the things they once did. We can live many fairly independent years. With the advent of new medications to retain/improve memory etc. can actually be fairly active and competent in most ways. I do very well, even though I no longer am responsible for financial accounts and bills. I am on disability, still drive, but have researched and provided family with a check list (from an auto insurance company) to determine when it will be time to stop.

I now have years (I hope) to watch myself go down the slippery slope into the dark abyss of Alzheimer's. I do expect to see my independence to become a smaller circle in a few years. I am sure I will resist and argue about it. But hopefully, I will go gently into my disease. I pray to be surrounded with loving and understanding individuals, whether at home or a facility.

It takes courage every day for the patient and caregiver. Getting up after a restless night, to face another day of not knowing what it will bring. Doing the best they both can do, giving and taking.   

It pains me every time I hear a joke or what someone thinks is a lighthearted comment about Alzheimer's. The really sad thing is I don't always speak up because it really hits to close to home. So, I hope everyone understands my take on this original posting. For me, to be researching for my future needs, coming to what is a positive resource for Alzheimer's Caregivers and  Patient's to read something that hurts me so.

I do realize that everyone has an opinion and that I seem to be in the minority with the topic. All I can say is God Bless all the Caregivers out there. I don't know which is worse, being the Caregiver or Patient.