I have tried to address many topics on this Blog that relate to how we, the spouses of the Alzheimer patients, are feeling about our husbands/wives,  and our changing relationships with them. We have discussed many of the emotions and frustrations that we are trying to deal with. Now it is time to hear the perspective of an AD afflicted spouse. The following essay is by Richard Taylor, Ph.d, author of Alzheimer’s From the Inside Out, who has been living with AD for almost 6 years. It is the most insightful and poignant piece I have read from the AD person’s side of the coin. If you have already seen it, it is well worth reading again.

I showed it to my husband, who said that it expressed all of his ideas and emotions related to Alzheimer’s Disease. If your spouses are able to read and understand, please show it to them. It will validate their feelings, and make them feel less alone.  
by Richard Taylor
My heart aches. Tears well-up in my eyes. A lump begins to take an uncomfortable shape in my throat. I'm sitting with another caregiver who feels at his/her wits end concerning how to please, get along with, love, keep safe, and hang on to their loved one. And, most caregivers seek to achieve all these ends simultaneously!

In the mean time, their loved one becomes more distant, more confused, sometimes off in a world of his own - angry, defensive, and, to complicate matters even more, doesn't always recognize their loved one nor honor the loved one's intentions. Trying harder and harder is not working; validating is not validating. In fact, it is producing more frustrations. And changing the subject is fast becoming a waste of time. What to do?

Ask them! (Ask me!)
Ask me each time your response does not produce a mutually acceptable moment for you and for me. Try to engage me with a goal of mutual understanding - of ourselves and each other; not who is right and who is wrong; not "why can't you be more like me.” Consider, even now I do not seem to have as many choices with my responses as do you. Admittedly, I still do have choices, but not the ones you may be seeking. You just seem to get madder and madder, more and more distant, progressively more difficult for me to figure out. Funny, that is exactly what you are saying about me. Believe it or not, you too seem to be more and more angry with me, more and more defensive, and this is happening quicker, lasting longer, becoming more intense and taking what seems forever for you to get over. I might even say you are becoming paranoid, difficult to live with, and almost impossible to understand! Now, where have I heard those words before?

I am still me, just not the me you keep trying to talk to, trying to reason with. I am always me, and I am always a complete me - part the "old" me, part the current "me" and part the becoming "me".
But wait, isn't that what is happening to you too? You too are changing. You blame it on me and I blame it on the disease! Could it be that neither one of us is good for the other? Have we grown too far apart to ever be reunited? Have each of us been driven by the other away from the commitment that had previously held us together through life's hard times?

Please don't rush to Dementia Divorce Court just yet. Yes, we are different in lots of ways, many of which we have never experienced before, at least not to these extreme degrees. Yes, all the old ways we had tested and relied upon to love, communicate, and resolve our conflicts with each other no longer seem to be working. What's left? Try Harder? Give Up? Get Out?
None of the above, thank you.

First, lighten up - on yourself and me. Remember, no one who has dementia, or is caring for someone with dementia will ever become a saint. We aren't perfect, and even when forgiven by others or ourselves we sometimes turn right around and commit the same "sin" again, only this time with more intensity.
I believe cognitive decline (Alzheimer's or any one of the other types) produces dynamics in relationships which human beings are ill-prepared to successfully respond to by themselves. Mistakes are destined to disrupt relationships, no matter how good or bad they were prior to the diagnosis. It's gonna get worse! Trust me. The only question is: "Will it ever get better?"
Yes, maybe!

The Second Step: Seek help and lots of it -- each of us, and both of us -- start right now! Cognitive decline is not a condition we can successfully integrate into our relationships or ourselves. I am deeply suspicious of individuals who claim the diagnosis has produced nothing but positive changes on them and their relationships. Smell as many flowers as you want, look at as many sunsets as you can. Still, all brains and their respective owners are much worse off after someone tells them, "You have Alzheimer's disease." Wiring changes while the brain cells continue to die. What lit up one part of your brain yesterday, is starting to produce a new glow in a different part of your brain today. Our brain cells are interested in one thing only: self-preservation. When we impose all the other requirements - I want to feel loved, okay about myself and understand what is going on out there; I want to be safe and sound and full and rich; I want to feel like s/he loves me like s/he did the day before the diagnosis - most times the brain wins and we lose.

We do a better job of messing up our lives than the disease (especially in the early and middle stages). Our feelings, irrational beliefs, impossible dreams set us up for a good deal of the stress we now say we would do anything to avoid.
The Third Step: Find, use, and keep a network of support and help -- not just friends, family, counselors, the Internet, the church and its members, books, other people in the same boat, drugs, diversions, and physicians. Include long term care insurance or a realistic financial plan, laughter, sex, a pet, plants, a chat group ... or even a piece of paper or sound proof room where you can write down or shout out your thoughts and feelings. Add to your daily life: reading books (other than those about the disease), become involved with a grandchild or two. The point is, find something more than this mess, which is consuming both of our lives.

Oh, and by the way: Please help me to take these same three steps. I will support you as best as I can, and you support me as best as you can. Together we won't lick this disease, but we will make our individual lives and our lives as a couple/family/friends more satisfying than they currently seem to be.
Richard

Profound and eloquent words from Richard Taylor, Ph.d

I am excited because my sister and brother-in-law from Chicago are coming for the week. They have been on the Alzheimer journey with my brother-in-law’s father, who passed away a few years ago. They will be understanding of whatever goes on here.
 I wish you all a peaceful weekend – please keep writing; I will check the messages regularly, and post them quickly.

Feedback to joan@thealzheimerspouse.com