Advice to an Alzheimer's Caregiver Partner Newbie

I am often asked, "What would you tell someone who just found out that their spouse or parent or friend was diagnosed with Dementia/Alzheimer's?"

My thoughts to myself, as I gather my about to be given "advice," is that there is a world of difference between a person's spouse and a person's parent. The relationships are different. The intimacies are different. The experiences shared are different. The way in which care will be delivered, both the caregiver's and the caregivee's needs are and will continue to be different.

With your parent, the relationship began when you were first born. It may have been an easy relationship or a difficult one. You had no choice as to who that parent would be and short of acting out and/or running away from home, you had no control over that relationship. Usually, the parent leads and the child follows. The parent has the power and the child has none.

It is said that the most important part of the parent/child experience is the child's slowly working to leave the parent and become independent. If you can do this successfully, the parent and child relationship can begin to move more towards one of friendship and mutual respect.

With your spouse, you elected to begin the relationship. There were the things you had in common, interests and experiences shared, and hopefully, the growth over time was two-sided. The passion and lust grew into love. The partnership was forged in a way that was negotiated, supported both your needs, your partner's needs, and the needs of your children if you chose to have them.

If you are lucky enough to have a successful union; you learn to live with the give and take, the shared responsibilities, the negotiations, and by taking the good with the difficult to provide a meaningful day-to-day way of spending your life.

I have discussed the two most important types of relationships one can have with another. But also one must look at friend and other family relationships as well. I'll not talk about this here but you can think through that on your own.

When Dementia / Alzheimer's come into the relationship with your parent, the responsibilities of "who is in charge" changes. With your spouse, the partnership slowly dissolves into a one-sided managed situation.

I have thought carefully about the differences if only because the day to day "advice" I would give for dealing with the situation, most likely would be defined or suggested by your relationship to the person who has received the diagnosis. I will not go into the types of thinking necessary for any of the different relationships but tailor my comments to anyone dealing with being part of the caregiving team created to support the diagnosis of Dementia/Alzheimer's.

But one more digression first. Most advice that I could give will seem trite. The person receiving the advice will most likely feel that I do not really understand their situation. For the information I might share to become real, the person must learn it, feel it, accept it themselves. One cannot tell another what to think let alone how to feel or what to do. One can only advise.

Hopefully, hearing some of this advice (and much of it is what I read about or have been told by others over time) will "light up" again once you have had time to process it, experience it, understand it, really need it. If you decide to own it as your own, then it will feel less banal and more applicable to you.

RESPECT the person. No matter what changes they go through. Find a way to help them continue to keep their "personhood" even as their abilities fail.

Be aware of the RIGHTS of the person diagnosed. As possible always respect their rights to be who they are, to make decisions for themselves or at least to participate in making those decisions, to live their lives in the ways they choose. Also be aware that sometimes and/or eventually, their rights must be disregarded but always must be done ethically, with love and respect, and only in their interests (not your own) for safety and health reasons.

BE PATIENT with the person. Their processing and understanding of the day to day activities of life, both mental and physical, are changing. The cognitive abilities are slowing down and/or the connections are no longer as easily made and eventually no longer exist.

CONTROL ANGER, as best as you can. Imagine that the person diagnosed is slowly living life backwards, losing what they have learned, and once again becoming more of a child. But what complicates the matter, is that they are becoming a child again but in an adult's body with an adult's worth of experiences and knowledge that will be at a wide range of various and changing levels of availability to them. How you would treat a very young child as they grow with wonder at the world around them is similar to how you must treat the person who is slowly losing this wonder.

REALIZE IT IS THE DISEASE, not the person who you are continuing to love and trying help. If they get angry with you, it is the illness. If they strike out, it is the illness. If they need you to repeat something for the hundredth time, it is the illness, not the person!

BE FLEXIBLE. As the diagnosed person's needs change, so must their environment change. Every day might need a different approach to almost every possible activity: toileting, grooming, eating, dressing, spending time, sleeping, etc.

Be SELFISH. Most people will be taken back by this term but I maintain that if you do not take care of your SELF, you will not have the energy or health to give to another. Find ways to relax, to refresh yourself, to get away for a short period of time, to make sure you visit your own doctor as needed, to enjoy yourself as you can.

ASK FOR HELP. This is a difficult one. First of all, it does not mean that you are weak or not doing a good job. Second, finding ways to involve other people who love you and love the person diagnosed is not easy. Everyone else had a life and most are oversubscribed. But there are ways that others can help to lighten your day-to-day.

YOU CAN DO THIS, what choice do you have, really. Hopefully, with support from family, friends, your religion if you embrace one, your therapist, your neighbors, a group of people in a support group or online chat room ... you can find a support system that works for you. You will be strong and find resources to keep going. Love will help. Kindness will help. Being good to yourself even though you are devastated will help.

YOU ARE NOT ALONE. So many others, in the U.S. over five and a half million are living with Dementia / Alzheimer's. Sixteen million people are in addition to their own self, providing care.

WAXING PHILOSOPHICAL: It will "GET BETTER" ... but sometimes better is not on this side of life. We all will die. For some of us, it will be easy, quick, and/or unexpected to die. For others, it will be anticipated, slow,  and/or very painful to die.

Usually, the parent wins the race to death. With a spouse, one or the other will win the race. Interestingly, the person diagnosed with Dementia does not always win the race! For everyone, we will grieve the loss of someone we love. Talking about death helps, in the long run, to ease the mystery of death. Conversations with the person dying and being there for and with them helps.

The biggest mystery of life is death. We think about it and fear it from the first time, as a child, we begin to have intelligent thoughts. Hopefully, its mystery also allows us to live a meaningful, fulfilled life with respect, love, and understanding for others.

YOU CAN DO THIS!