I know we talk about the different stages of the disease. I also see stages in the life of the Caregiver.
1. Denial - We do not want to think that there may be a problem 2. What' wrong - The problem becomes so large that we wonder what is wrong. 3. Persuade - We must get our mate to see a doctor and get test and find out what is the issue 4. Shock - We are numb to the facts that everything is going to change 5. Notify - We start to tell friends and family of the situation 6. Abandonment- Family and Friends tend not to want to deal with it and are uncomfortable. 7. Hurry - We need to go see and do the things we have postponed waiting for when we had more time. 8. Education - We start researching to learn everything we can about the disease. 9. Drug Trials - We hope that a new drug will be the answer 10. Financial - We look at how we are going to pay for everything 11. Frustrated - We become frustrated with the system and how it is failing us 12. WTF - We start to accept that we can only do our best and that is it. 13. Grief - We feel and mourn the loss of our living mate. 14. Acceptance - We begin to accept what is going on is out of our control 15. Rock'n chair - We pace ourself to the disease 16. Depression - We are depressed with our situation, we feel guilt at not being better able to handle things and anger creeps in.
I would re-order some of them for me. I have passed grief but am definitely in Rockin' Chair and acceptance, with a wee bit of depression. I think I might characterize my current stage as "Doldrums."
Number 7 has been a biggie for me. Essentially my life is in limbo as I have become the caregiver. Every thought has to be about my DH, what will I do about him, how will he react. In some cases I already have the answer and do not want to go there. I would just love for a few days to focus on ME and what I want.
Very well thought out. I suspect you've captured what the vast majority go through to a very high extent. I'm going to post your work on the canadian board if you don't mind. It's helpful for people that don't analyze to see something like this laid out for them to consider.
I continue to be at odds in that while I'm sure I have depressions to various extents because it would almost be insane not to feel that as a result of what the disease does to us for so long - I am in the apparently tiny minority of people who feel anger more than depression.
To be clear if you chart the entire spectrum of possible feelings onto a dartboard, I've hit them all with sometimes spectacular variation in a single day. Get up peacfully feeling calmness and serentiy because it's quiet and I've laid in drowsiness going through things in my mind, having a string of things go wrong too quickly making me literally vibrate with frustration, blow loudly that I can't take this anymore, walk off to my room and shut the door and calm down, swamped with guilt that I'm not handling this, grateful she's so forgiving (and forgetting) she gives me a neckrub and continues to run her hands over me so that I shut my eyes hanging on to the touches I know so well, get everything done in a long burst of energy, feel strong and attentive for a long run, see a really tender moment on TV and tear like a river, crash into a deep nap, sit watching her sleep in a very tangible lonliness, and see the reality and that I am getting it done, listen to someone far away call me a saint and don't know how I do it - get her to bed and read a bit, pat my bed buddy cat, and turn out the light.
We talk about normality. The truth may be that the caregiver lives moment to moment because while it may all be a good or easy day, at any moment it is not, and always the trend is that new hardships and new loss show up sometimes to go away for awhile, usually to come back and add (or subtract). The normal person can go weeks and months and years with little variation in what is 'normal'. We have that comfort shredded from us and once we get through denial, and then shock, and so on through your list - we reach the same numbness as soldiers in long wars trying to remain strong in the moment knowing many bullets are yet to fire.
It isn't just Alzheimer's disease. It's the trauma of the psychological arsenal and how that is unleashed over a long time that damages us. The physical work itself we can do. Seperate just the physical labor of caring for them in your mind and you might agree. The work isn't the thing really. It's what those 16 steps do to a human being over time.
Wolf, I feel the anger too. Right now, I am so mad and frustrated. Who should I be mad at. I am mad that all of this is on me. I have worked hard all my life and now at 72, I wonder what I did wrong. I feel as if I am being punished. It is just not fair.
O copied and pasted this and am going to send this to our ALZ assn group meeting leader..Thanks for the ok to share this around. I am also going to send it to others in emails. I identify with all the ones you have listed.
No 7 is not so much on our list since DH is so slow at going from here to there and when I mention taking a little trip he doesn't want to go..I think he recognizes how hard the going is too even a flight across country to see the kids and stay at their house or take a 3 hour drive for overnight to see relatives in L A.
I am in number 13 with 16 creeping in. I miss him so in everything everyday. He looks the same and some folks probably don't know he isn't but our children and I certainly do. I grieve for him and all we have lost. I didn't think he knew that he had lost so much of his ability but sometimes now I think he does. He says he is so stupid when he can't remember or do the ordinary things he has always done. This stinks!!!!